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

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.

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

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

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

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.