Errors in Pathology, Arrogance, Apathy and Greed – Misdiagnosis of B12 Deficiency
 

Hello, and greetings from Sippy Downs, Queensland Australia.

I decided to join this forum after cat265 posted a link to my web site in the thread new web site for B12 deficiency.

I have suffered what is probably irreversible neurological damage, as a result of misdiagnosis of vitamin B12 deficiency.

I have also recently been diagnosed with vitamin D deficiency and DHA (an essential fatty acid) deficiency. We are still in the early stages of testing for these problems. I also have lactose intolerance and ventricular tachycardia (a potentially dangerous increase in heart rate), and I am being treated for depression.

In May 2007, I set up a web site, Errors in Pathology, Arrogance, Apathy and Greed – Causes of Misdiagnosis of Vitamin B12 Deficiency, for the sole purpose of exposing the misdiagnosis of vitamin B12 deficiency. It contains no advertising, does not offer to sell anything and is funded entirely by me.

As cat265 found my site a little confusing, I will try to explain here what it is about.

I claim that vitamin B12 deficiency is misdiagnosed, causing unnecessary suffering in thousands of patients, because:

• Pathology labs recommend, and doctors order, the wrong tests
• The labs quote incorrect reference intervals and cut-offs
• There are frequently very significant analytical errors

After I discovered my B12 deficiency in October 2005, I commenced investigation of my disease. This included research on the Internet and laboratory tests. On the References page of my web site, I have provided direct links to many of the research articles that I found.

It soon became clear that there were very serious problems with the lab results. Over the next 13 months, what started as an investigation of my B12 deficiency became an investigation of the labs.

On my web site, I provide details of my investigation, with access to all evidence including lab reports and an Excel file containing tables of results and charts.

This first investigation covered what I call Series 1 of my lab testing, from October 2005 to November 2006. Two much shorter investigations from early 2007, Series 2 and 3 are also included.

I will post a separate message about my current tests, Series 4.

Although one lab threatened me with legal action before I published my site, there has been no response from them in the six months since publication. Indeed, no lab or pathologist has taken up my offer to publish a response to refute my claims.

My attempts to advertise my site in the medical media have failed; they will not allow any criticism of the medical profession in Australia. The doctors are also not interested; of 119 doctors organisations I contacted, only 6 agreed to raise the problem of vitamin B12 deficiency with their members.

If you visit my web site, I suggest that you read these pages first:

If you are interested in my investigation:

• Home Page
• About Me under Personal
• Summary and My Story under The Investigation
• Remaining pages under The Investigation
• All pages under Quality Assurance?

If you are looking for information about B12 deficiency:

• References - contains links to many expert reports
• Expert Opinion under Vitamin B12 Deficiency

If you are looking for more technical information:

• Both pages under Interpreting Results
• Both pages under Immunoassays

If you would like to see the response to my claims and my web site:

• Responses under Right of Reply
• Both pages under Right to Know

I welcome any comments or questions about my web site. I suggest that you first read at least the following two references (there are direct links from the References page):

• G1, Vitamin B12 Deficiency, Oh and Brown, Am Fam Physician
• H6, Active-B12 (holotranscobalami)

The first reference is an excellent independent report on how to diagnose vitamin B12 deficiency.

The second reference is produced by a supplier of test kits for the new test for Active B12 (holotranscobalamin) and you need to be aware that it is promoting a product. I am currently testing the claims made for Active B12, as part of my Series 4 tests, and cannot yet publicly comment on the effectiveness of the test. It is worth reading because it gives a good explanation of B12 deficiency.

You are invited to visit my web site at www.paulgolding.id.au/.

Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site.

Thank you.

Paul

Hello Paul...
 

I did look at your site, but it is rather large for me.

I can see you are actively working to bring information to others' attention.
And that is always a good thing. It is however, unfortunate and wasteful to have to be injured in order to do it. :(

I didn't read every word of your site, but I do have a question. Given all the nutrients you seem to be low in, did you ever get evaluated for gluten intolerance or celiac? There is a difference between them test wise, but basically they both can cause malabsorption of nutrients. So over time these patients develop many deficiencies.

We have a Gluten forum here, and there are resources on the net that are very detailed.
http://jccglutenfree.googlepages.com/

I am sure there are folks here who can benefit from your postings. This problem of hidden or unaddressed medical issues is appalling. This is the main reason I post on the internet.

People don't always answer on bulletin boards here, so don't become discouraged...there are eyes reading and thinking.

Hello mrsd,

Thank you for your comments and suggestion.

I was tested for gluten intolerance and celiac disease a few years ago, at the same time that my lactose intolerance was diagnosed, and was negative.

You do raise a very good point though because, as pointed out by my rheumatologist, malabsorption disorders often come in groups. We are concerned about my borderline levels of iron and zinc and will be doing further testing. At present I am focussing on my B12 deficiency research, as well as my vitamin D and DHA deficiencies.

Paul

Misdiagnosis of B12 Deficiency - My Current Research - Introduction
 

Hello,

In my first post, I mentioned that I am currently conducting a new series of tests, Series 4. Here I will explain what I am doing and why. I hope to be able to post some preliminary results in a few weeks.

As described in detail on my web site, I have already confirmed that total serum B12 is useless for the diagnosis of vitamin B12 deficiency. My claim is supported by the opinion of experts quoted on my web site:

• Read the quotes in Expert Opinion under Vitamin B12 Deficiency
• Read at least reference G1, Vitamin B12 Deficiency, Oh and Brown, Am Fam Physician
• Read reference H6, Active-B12 (holotranscobalamin)

My own findings, from my tests of 2006, support this claim:

• Read My Story under The Investigation

Before I continue, I should point out that what I am doing is potentially very dangerous. As they say, "please don't try this at home". I am working closely with my doctors and pathology labs to minimise the risk.

I am currently using myself as a "guinea pig" to determine the effectiveness of the various pathology blood tests. I am doing this by allowing my vitamin B12 level to progress from depletion of stores to definite cellular B12 deficiency.

If you would like some information about the stages of vitamin B12 deficiency then I suggest that you read page 16 of reference H6, and reference G1. There are direct links to these reports from the References page of my web site.

Unlike the first three series of tests, described in detail on my web site, this new series is not investigating the specific laboratories taking part. The labs are fully cooperating with my investigations.

There are two objectives of my current research:

• Determine the minimum dose needed to correct my B12 deficiency
• Evaluate the effectiveness of the currently available pathology tests

I commenced having my blood samples collected weekly since 5 March 2007, by QML Pathology in Brisbane, as part of a dose-finding trial. This has been done by commercial agreement, at my expense, and no cost to Medicare.

The weekly sample was only tested for total serum B12 by QML, until we added holotranscobalamin (Active B12) on 17 September.

To protect myself against the onset of vitamin B12 deficiency, which might not be detected by either total serum B12 or Active B12, I also tested for the two metabolic markers of B12 deficiency. Every four weeks, QML sends three frozen serum samples to the NSW Biochemical Genetics Service at The Children's Hospital Westmead in Sydney (CHW). One of these samples is tested for methylmalonic acid (MMA) and total homocysteine (tHcy) using stable isotope dilution tandem mass spectrometry (LC-MS/MS); this is the reference method used by Mayo labs. All three samples are stored frozen for future testing by another lab. I have confidence in the reliability of results from CHW because of their excellent performance last year.

The initial main objective was to assist in finding the cause of the deficiency. For example, if the required dose was very small then the cause is more likely to be dietary deficiency than PA. By slowly reducing the dose of oral B12 in steps, from 1000µg per day to 10µg per day, I can test the dose response. I have used Excel to construct charts to compare the dose and the response.

I recently decided to extend the trial to include the second objective of observing the response of all four analytes, total serum B12, active B12, MMA and tHcy, as my cellular vitamin B12 deficiency proceeds.

When my results are conclusive, or when it becomes too dangerous to continue, I will commence increasing the dose of oral B12 in steps up to 2000µg per day.

I intend to publish preliminary results on my web site, as charts and a table, once the trend is clearer. It has taken eight months, and 35 blood tests, so far. Clinical trials take a long time and cannot be hurried if we are to obtain valid data.

To summarise, these are the tests that I am comparing as markers of vitamin B12 deficiency:

• Total serum B12
• Active B12 (holotranscobalamin)
• Methylmalonic acid
• Total homocysteine

Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site at http://www.paulgolding.id.au/.

Thank you.

Paul

Paul, I diagnoised myself with a functional B12 deficiency.

My B12 was well within normal - 750, but my homocysteine was elevated, originally 13.5-ish. Supplementing with oral cyanocobalamin only resulted in a small decine into the mid 12's.

But starting mega doses of methycobalamin brought it down quickly into the normal range within a week. I just had more testing of this today and won't know the new levels for a few days.

I think that there are who have normal B12's above the median value, who are functionally deficient of the neurologically active form, methyl-B12 and have no clue, and their doctors have no clue either.

Please be very careful about self-diagnosis of B12 deficiency.
 

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.

I have "diagnosed" myself with vitamin deficiency. I am very ignorant regarging to the possible dangers of this. I read all the benefits people got from taking methyl b12 and i fugured out it would be good to give it a try, since according to Rose here, one cannot be damaged by too much B12. Do you think this is stupid??? I don't want to spend loooooong hours and a lot of money on making the blod tests. Besides, if the information they show is no reliable, what is the point of getting them??

Please be very careful about self-diagnosis of B12 deficiency.
 

Hello theresej,

Thank you for explaining your situation so clearly, and in so much detail.

It is now apparent that you know what you are doing; I hope that my words of caution did not offend you. I am worried about less experienced people acting on advice, either given on these forums or from ignorant doctors, without first carefully checking the evidence.

If you have not already done so, I suggest that you visit the excellent web site of Rose. This is a direct link: http://roseannster.googlepages.com/home

Paul

Please be very careful about self-diagnosis of B12 deficiency.
 

Hello Monica,

As I said to theresej, before it became apparent that she knows what she is doing, please be very careful about self-diagnosis of B12 deficiency.

No, it is not stupid to take methylcobalamin if you are vitamin B12 deficient; it is the best form available. I did not use it for my research because it was not readily available here, and I do appear to respond well to cyanocobalamin.

If you had not already commenced taking the supplement then I would have suggested tests for methylmalonic acid and homocysteine first. Once you are taking B12, you can no longer compare the before and after results.

The problem with having taken the supplements before testing is that you do not know whether or not you actually need them. I cannot advise you to stop taking them in order to find out. This is because, if you are deficient, you could suffer harm by ceasing treatment for the time it would take to return to your original levels.

My research shows that it can take a very long time to deplete your stores; a very dangerous thing to do because damage can occur even at high B12 levels. This is why it is so important to get the evidence of disease before taking the supplement.

Is it worth having the blood tests? You will need to decide for yourself, but consider these possible scenarios:

1. No blood tests, no treatment, with B12 deficiency:

• Increasing disability
• Eventual death likely

2. No blood tests, taking supplements, no B12 deficiency:

• Unnecessarily taking supplements for life
• Risk of masking folate deficiency

My advice to you is similar to what I offered to theresej:

• 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

Monica...
 

There are differences between people, who can benefit from B12.

I think in your case, having a tentative diagnosis of autoimmune disease...3 months of very high dose steroids, the hyperbaric oxygen treatment, etc,
your needs are probably (no guarantee) for remyelination of damaged nerves.

You are very young to have failure of intrinsic factor. But it can happen.
If you were totally vegan before you became ill? Or if you used acid blocking drugs to protect your stomach during that long haul with Prednisone.

Here is an article that suggests Omega-3 for damage to the nervous system.
http://www.sciencedirect.com/science...bdd1ed86239c46

In order for the Omega-3s to work you do need the 3 Bs... B12, folic acid and
B6. So if you want to try and get that pain out of your legs...I'd give this a try. It takes months to repair, and you won't see sudden results.

There are going to be people here reading this forum, who have hereditary errors in B12/homocysteine chemistries. There are going to be people with malabsorption from disease (like Crohn's), or damage from chemotherapy, or chronic damage from lack of stomach acid, or destruction of the cells that make intrinsic factor.

You can also try to increase you food consumption of antioxidants, like that article suggests. Red, yellow, orange, purple fruits and veggies are high in these.
Broccoli is very good too.

You are young, and I think you can heal. But healing takes time, and some effort on your part.

Paul, not at all.

It is important even when we think we know what we are doing to be cautious and continue to investigate, research and learn.

I just learned a few momments ago that supplementing with B12 in mega doses can cause Potassium depletion. I do not have any more information than that at the momment, and found this from reading something the author of "Could it be B12" said. I am trying to find more information on this at the momment.

However, this is interesting as for the past few days, I had been experiencing constant excessive tightening in my calf muscles that prevented me from being able to pull my foot up all the way, and was quite painful when I would try. Attempting to stretch the calf did not work either.

I didn't take my methyl-B12 supplements for 24 hours, and during that time, the tightening/spams lessened. A few hours after the 24 hours were up, it was gone.

Interestingly, after almost 6 months of absolutely no arrrhythmia, I started having some isolated palpitations in the last couple of weeks. Potassium deficiency can result in both, the heart being much more sensitive to potassium levels.

Funny, I noticed I've been eyeing the bananas on the counter more than usual recently. ;)

I believe that...
 

the potassium connection is much greater in people injecting B12.

When you take it orally, not much is absorbed in reality.

You might want to consider magnesium for those feelings and palpitations.

3oz of unsalted almonds have 270mg of magnesium.
Edamame beans have good levels of both potassium and magnesium.

well, as I looked into it further it appears that it is when treating severe b12 deficiency induced anemia intensively with b12 that huge draws on potassium can occur specifically related to the red blood cells, even leading to fatal hypokalemia. I am not dealing with hematological issues, so this doesn't appear to fit.

The key word is "intensive"
 

Since doctors tend to inject 1000mcg daily during "intensive" therapy.

Here is ONE case from 1987:
Typically oral therapy is not considered intensive...since only a few micrograms are absorbed from one dose. It is a slow process, taking weeks/months.

Hi, all.

Sorry I've been away for a while. Glad to see so much activity here.

A drop in potassium is generally brief, and I suspect that the people who are seriously affected are in very advanced stages of deficiency and very fragile.

The danger as far as I know is in masking a B12 deficiency with folic acid supplementation.

It is unfortunate, but one can go through many doctors (even holistic ones) before finding one who isn't dangerously ignorant regarding B12, it's diagnosis, treatment, etc. Ironically, the MD who plagiarized my writing and put it on his commercial site is "holistic."

In my opinion, the danger is in not getting the B12 one needs, not in taking it for life.

Wow, you guys have been busy. :)

rose

Risk of Fatal Hypokalaemia
 

Hello mrsd, theresej and rose,

Part of the reason for my decision to use oral B12 rather than injections was the risk of fatal hypokalaemia. I have ventricular tachycardia, a potentially fatal cardiac arrhythmia. Using the oral dose did not completely protect me because I still suffered a very frightening episode of hypokalaemia after taking my first oral dose of 1000µg cyanocobalamin, when my serum B12 level was 100 pmol/l; I did not take Slow K until after this episode. This is how my then GP reacted to my hypokalaemia:

Here are quotes from reputable sources (I added the bold):

This is from Cyanocobalamin, Hazardous Substances Data Bank, TOXNET, NLM, reference J6 in the References page of my web site:
This is from Medsafe NEO-CYTAMEN Data Sheet, reference J6:
The second quote also is relevant to the potential problem of masking folate deficiency, by commencing B12 therapy without first ensuring that there is a not a folate deficiency.

Another problem is that Slow K interferes with absorption of B12. I only used it in the first two weeks in 2005.

There are some more details of my hypokalaemia episode on the My Story and Vitamin B12 Deficiency - Doctors pages of my web site.

Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site at http://www.paulgolding.id.au/.

Paul

Paul...
 

Have you been evaluated for renal tubular acidosis? This is a kidney disorder
that wastes potassium. Paul, did you go to the ER and did you get a serum reading showing you were low in potassium during that
event? Did you have megaloblastic anemia?
Since you already had that ventricular issue for years, you could have been hypokalemic for a long time already. I suspect you have other issues, besides the low B12. You already state a DHA (fatty acid ) deficiency and EFAs help regulate heart rhythm. Also magnesium. If you are not converting to long chain EFAs like DHA that could mean you are low in magnesium and B6.

Often when people get into a severe state like you describe, there are many variables at work.

One dose is not enough time wise to increase production of red blood cells. This takes place in the bone marrow and
is a time dependent situation. I only found one page on PubMed with one case on hypokalemia.

The quotations remind me of many references that have not been updated for many years. Of course, the context may tell a different story, but I believe they are operating on the assumption that everyone who is B12 deficient has anemia (megaloblastic or macrocytic anemia wrongly referred to as pernicious anemia). That would mean that some of the people they are referring to have become extremely fragile, and depending on how they have tested the subjects, some may be B12 deficient even though the docs think it has been ruled out.

Regardless, since folic acid is added to many foods, and since malabsorption of B12 from foods becomes quite common as people approach and pass middle age, B12 deficiency is more likely and extremely damaging. Also, because B12 deficiency is very likely to go undiagnosed by ignorant physicians (most on this issue), a person would be statistically far safer to take their 1000 mcg B12 and separate B complex at another time of day than wait to be diagnosed.

Unless a person has some other problem, the likelihood of serious consequences of brief low potassium due to B12 treatment is almost surely because B12 deficiency has been untreated far too long. And I have yet to see anything that convinces me a person would experience a potassium dip if they didn't need the B12. I'm open to any credible information to the contrary.

As suggested here often, when people have serious symptoms and begin B12 treatment, it is a very good idea to make sure potassium-rich (brief dip in potassium when beginning to get the needed B12) and iron-rich (longer heavy draw on iron stores when the body works on repairs) foods are eaten and a B complex taken.

It is also a very good idea to insist on a ferritin test. If iron stores are high, of course a person would not want to eat a lot of iron-rich foods and would certainly want to avoid anything fortified with iron, Most docs will not order the ferritin test unless the patient asks, and high or low iron often goes undetected because the more common and less sensitive tests are relied upon. Those common test results can be smack down the middle of the "normal" ranges while a patient is low or high in iron and/or B12.

rose

yes, rose...
 

Red blood cells contain alot of potassium. In fact if a blood sample is improperly taken, too tight a tourniquet or improperly stored so that the cells burst,
the potassium reading is factitiously elevated for that test (falsely high).
The red cells dump the potassium into the serum where it reads inaccurately.

So the reverse also occurs during rapid cell formation. As the cells are stimulated to grow faster, they consume the potassium. If they are not doing that (no megaloblastic anemia is present), then the B12 goes elsewhere, and hence no fall in potassium occurs. We need to consume quite a bit from diet daily--- the new suggestions are 4.7 grams a day.

People can lose potassium thru the kidneys if they have renal tubular acidosis, take steroids, or have chronic diarrhea/vomiting. Diuretics given for blood pressure also deplete potassium (except for Dyrenium and Spironolactone).

I think that is why the literature has so few reported cases. The patient has to be in a medical crisis of sorts already, to react to B12 with hypokalemia. And I would expect injected doses to be more problematic with it.

Risk of Fatal Hypokalaemia
 

Hello Rose,

I think that there has been a misunderstanding about why I am here; we are on the same side. Please see my next post, Why I started This Thread, before replying to this post.

Firstly, I would like to thank you for your excellent web site. I hope that you did not mind me placing a link to it from my Useful Links page. We are both attacking the same problem, from different angles. You, and others here, are helping people directly with specific advice; I am fighting bad science, and abuse of power by pathologists, with good science.

My post about hypokalaemia was in response to a discussion that had developed on this thread; it was intended to explain why I made the decision to use oral B12 at the time, and under my specific circumstances. It was not a comment on whether or not others should do the same.

The documents I quoted from are data sheets for B12, and do not make any assumptions about what has caused the deficiency. They warn of the possibility of a problem with hypokalaemia. I quoted from them because my then doctor ignored the warnings and offered me a B12 injection, without considering the potential consequences.

I certainly do not assume that everyone with B12 deficiency must be anaemic; in fact, as you would see from my web site, quite the opposite. There I quote from reputable sources that 30% of us with B12 deficiency do not have any haematological signs; I am one of those. In Vitamin B12 Deficiency - Doctors and in The Investigation - My Story, I strongly criticise the doctor who told me that I cannot be B12 deficient because I do not have anaemia.

It is possible that I did have haematological damage at the start; that would explain the episode after first taking the oral dose, but we can never be sure.

I agree with you. I was not too robust by then, in early November 2005; B12 100 pmol/l and stable, MMA 1.79 µmol/l and rising very rapidly, tHcy 12.3 µmol/l and rising very rapidly. A few hours after taking my first oral 1000 µg cyanocobalamin, my heart rate and blood pressure increased rapidly and I felt absolutely rotten with palpitations and chest pain, but the doctor turned me away without bothering to test anything.

I totally agree with you about doctors; I would have been dead long ago if I had waited for a doctor to diagnose me.

However, there might be one point on which we will have to agree to slightly disagree; there is nothing wrong with that. I would much prefer to see MMA tested before commencing treatment, because I believe that a significant change in MMA is diagnostic of B12 deficiency. Proper application of currently available tests should be able to give a correct diagnosis. The problem is that many doctors do not know what tests to order, or how to interpret the results.

Correct testing could prevent a non-deficient person from needlessly taking supplements, or having injections, for the rest of their life. I am also concerned that treating for B12 deficiency, without first testing for folate deficiency, is risky.

Where a patient cannot get a doctor to test them first, or where results are unclear, I would agree that treatment should be commenced ASAP.

Also, as I said in a previous post, if someone has already started taking B12, they should not stop in the hope of getting back to their original condition and then do the tests. My current testing has shown that B12 levels can remain high while cellular deficiency commences. I intend to post details of my interim results in a few weeks.

I am very much in favour of "evidence-based" medicine. By this I mean scientific evidence of disease, and scientific evidence of effectiveness of treatment. This is possibly the result of my own personal experience, as well as my background in applied science and engineering. One look at my web site will tell you that I am into strict evidence gathering; scientific data analysis is my specialty.

We should be able to trust medical scientists to act in the best interests of the patients. Perhaps this is why I am so appalled by the betrayal of the patients by the pathologists in particular.

I am trying to fight the system so that doctors will no longer be fed the incorrect information by the pathologists and medical media.

Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site at http://www.paulgolding.id.au/.

Paul

Why I started This Thread
 

Hello mrsd, theresej and rose,

It appears that there might be some misunderstanding about why I started this thread.

You will have noticed that I have tried to avoid giving other members specific advice about their conditions. I have tended to be very cautious; for example, I advised Monica:

This response should not be taken as a criticism of the fact that others here offer more specific advice. It should be seen in the context of the different approaches that we have taken to this problem; we are all on the same side.

All of you are probably in a far better position than I am to offer specific advice to other members of this forum, and to deal with their many problems in a very understanding way.

I have chosen to tackle the problem at the source by taking on the pathologists and the medical media. My background in applied science and engineering, specialising in scientific instrumentation, has allowed me to take a very analytical approach. As I said to one lab, I know garbage data when I see it.

As I said in my first post on this thread:

By exposing errors in pathology, as well as the arrogance, apathy and greed, I hope to force a change in the system. To do this, I have used two methods:

• Publication of my findings regarding poor performance by the labs, supported by references to expert evidence
• Original research to establish how the currently available tests perform as I become deficient in vitamin B12

So, when I am asked for specific advice, or when someone says that they have diagnosed themselves, I must be very cautious. I would much prefer to allow you to deal with that.

I hope that my web site, especially the References page, can be used as a resource by others.

What I do feel comfortable advising people about is the following:

• What sort of doctor to look for
• Where to find reliable information, including expert reports
• Which tests are, or are not, useful for diagnosis of B12 deficiency

But you are doing that extremely well already.

I am more likely to be able to assist with the more technical questions. I can comment on technical aspects of lab reports and testing methods, including:

• Whether or not a difference between two results is statistically significant
• The correctness and usefulness of interpretation data, including "normal ranges" and cut-offs for any of the current B12 tests
• Reliability of some testing methods

If you have visited my web site, you will see that I am up against very serious opposition:

• Pathologists deny that there is a problem
• Medical media refuses to publish paid ads for my web site
• Doctors' organisations refuse to inform their members

Pathologists deny that there is a problem

The RCPA (Royal College of Pathologists of Australasia) changed their RCPA Manual in response to my web site. They now directly refute my claims, and the findings of experts, at the expense of patients. Here is what RCPA Manual now erroneously claims about Vitamin B12 deficiency:

As I say on my web site, this is misquoted, and taken out of the context intended by Solomon.

One lab set their lawyer on to me when I told them that I was investigating:

Medical media refuses to publish paid ads for my web site

None of the four mainstream medical publications would agree to publish an ad for my web site. One set their lawyer on to me when I questioned their decision.

Doctors' organisations refuse to inform their members

I wrote to all 119 Divisions of General Practice in Australia; they represent almost all of what we call general practitioners, primary care physicians. Only 6 agreed to inform their members about the problem.

The local reactionary and conservative establishment is not all that I am up against. The new test that I am currently researching, holotranscobalamin, is marketed as a kit for "Active B12" by Abbott Laboratories. That company is worth about 100 billion dollars; they could crush me like a bug. I intend to publish my results regardless. A few years ago, they were fined 100 million dollars for inadequate quality control; that amounts to ten days profit.

In an editorial in Blood journal, my reference G21, Ralph Green said:

I hope that my objectives are now clearer; I am here to offer my research, both from the Internet and my own original data, to help others.

Please post any comments or questions to this thread. If you wish to contact me for a private discussion, please Email me from Paul in the Contact page of my web site at http://www.paulgolding.id.au/.

Paul

Paul,

I am very sorry if it seemed as though we thought we were on a different side. It appears and has appeared that we are discussing this from a point of view, that of people who have learned the hard way that there is a tremendous amount of ignorance in the medical profession (and editors of medical reference materials) and that the ignorance is dangerous.

I would have died some time in 1999, probably early in the year, if I hadn't managed to get to a neurologist who was probably in the top 5% regarding information on B12, its diagnosis and treatment. And even he was behind, but he saved my life.

The previous was a discussion in my opinion. And I am pleased that you have linked to my little website. :)

The most knowledgable doctor I have encountered was a neurosurgeon who several years ago was telling people with symptoms to take methylcobalamin because any testing would not be 100%. It was all I could do to refrain from hugging him.

rose

LOL! It's been a surprising journey to find my way here and what I have learned from you and others. :)

My pcp was curious, so since I had lab work done a few days ago, and the samples were still available, they added a cpk to the list, which will show my potassium level. I suspect it is going to be perfectly normal, which it always has been. But if, for some reason it's not, I will let you all know. :)

Risk of Fatal Hypokalaemia
 

Hello mrsd,

Thank you for your suggestion about renal tubular acidosis. I have not had any specific tests for that, and will need to read up about it.

I did not go to the ER after the doctor sent me away. I went home and eventually improved enough to remember to check my blood pressure and heart rate; both were very much higher than normal five hours after the episode had subsided.

So, I was not tested for potassium level, and my blood film was not examined, at the time of the episode. Perhaps I did have haematological abnormality at that time, although it has not been observed since in any test. It is possible that the episode was not hypokalaemia, although it did coincide exactly with my first dose of oral B12.

My VT was not caused by potassium deficiency; it had been there for decades. I was very thoroughly tested by the cardiologist, including for electrolyte levels. I was operated on by a cardiac electrophysiologist who performed mapping and ablation of the pathway. He did find unexpected instability, and there is no certainty that I will remain free of VT. All heart operations carry a one lifetime warranty!

There could well be a link between my B12, vitamin D and DHA deficiencies; I am still searching for it. I have been focussing on my B12 deficiency for over two years; the other two were discovered only a few months ago; I am working with my doctors on them.

I have several proven deficiencies, and suspicions about others; I have many symptoms. This is why I must be very careful; I will otherwise be unable to sort out which change caused which effect.

I am only able to concentrate for a few hours each day; I am very slow, and become tired very quickly. It took me three hours to write my previous long post ("Why I started This Thread") today.

Paul

you know Paul...
 

When one is confronted with a very complex medical puzzle like you have,
it can inspire alot of anxiety. One can read things in the literature and without medical training or background one can become very alarmed. I only bring up the low potassium issue with you, because it is very rare. There are just so few papers on it (I could only find one, and it was OLD).

Living with palpitations for as long as you have, is painful. The feelings lead to fear...and now there is anger because you were not listened to.

I think your website is doing a good job. What rose and I do which is similar is try to put the data into context for people. We want to educate, and not further alarm. People who are ill already are already alarmed.

Now to move on the your EFA deficiency. I think you should be doing something aggressively to raise your Omega-3 status ASAP. Low EFA status causes heart beat irregularites too. Males are not efficient in converting alpha linolenic acid in food, to the long chain EFAs EPA and DHA. Females who are intended to reproduce and pass these EFAs to the fetus convert much higher.
I saw a ratio once. Males convert about 4%, and females about 20%.
So after you were born, you have to rely more on your DHA that you received from you mother, than females do.
Basically if you are so low in these, you are lucky to be alive now. You just have to have them. Either from eating salmon or taking fish oil. So I hope you are doing that right now.

The body tends to conserve potassium whenever possible. But there are genetic errors with potassium use--one is called Periodic paralysis. You can look that up. And the other is loss thru the kidneys which is renal tubular acidosis (which can be mild and not really obvious). You need to eat at least 4.7 grams of potassium a day, so people who do not eat properly can get low.
For example...a can of V8 juice 12oz has the same amount of potassium in it as one of your SlowK tablets. Not many people understand how some foods can easily provide potassium. 1/2 cantaloupe has 1,400 mg of potassium!

And you can have irregular heart beats if you are low in magnesium. This is very common, and estimated that 7 out of 10 people do not get enough magnesium daily. I have a magnesium thread here that you can read. It covers the subject quite well. So I hope you look at it.

And in addition to all of that, palpitations and/or racing of the heart for no apparent reason, and an endless list of things, can be due to low B12. And I can vouch personally for the fact that some of us experience exacerbations of those things after beginning treatment, not only within days or weeks after beginning treatment, but periodically throughout months or years as the body repairs. In my case, the heart irregularities became worse at times during the first months of treatment before disappearing.

So, it may not be possible to separate it all out. But of course it is important to be alert to possibilities that require attention.

rose

Educating People about B12, and EFA
 

Hello mrsd,

I agree with your comment:

When I set up my web site, I had to decide who would be the target audience. My original targets were the doctors, pathologists and medical media. To get the message across, I have had to use shocking examples of lab errors, arrogance apathy and greed. Until I joined this forum, I had not attempted to attract patients to it.

Anyone intending to visit my site would be best advised to read through the material on Rose's site first; it provides a much better introduction to vitamin B12 deficiency. They can then check out the Vitamin B12 Deficiency section of my site and use the References page to access links to expert reports.

I will post a separate message about EFA on your new EFA thread; that will keep it all together, and leave this thread to the original subject.

Paul

Paul,
 

It has been my overwhelming experience that doctors do not go on the net, or care about websites. They have no reason to, and think they are right all the time. Many doctors think the net is filled with kooks! I know because I talk to them.

I think the major target audience is the patient on the net.

rose and I have been doing this for over 10 yrs now. I have to get my smelling salts out if a doctor comes on anywhere where we work!

It took over 8 yrs for Omega-3 to filter down thru the continuing education network to physicians. It will take a while now for other things as well.
There is actually an RX fish oil here in US. And a great neuropathy vitamin
mixture called Metanx. This took a LONG time coming.

Educating the patients, giving them options, and data that they can copy and take to their doctors is the best way to disseminate information safely.