New B12 deficiency book

[Sleepybunny]

Hi,

Just wondered if any of you had read this recently published book and what you thought of it.

"Vitamin B12 deficiency in clinical practice"

It's written by people associated with B12d.org and is mentioned on the B12d.org website.

b12d.org/index

[nano2]

Daughter bought this weeks a go just managed to flip though seems informative by a Retired GP and others.

[fbirder]

If the book is at all similar to the publicity blurb then I can see me having to spend a lot of time debunking it.

"Dr Chandy was the first to notice that B12 deficiency can occur without macrocytosis"

Only if he made that discovery 54 years ago...

"It was concluded that vitamin B12 deficiency could not be detected with certainty from clinical or haematological findings but only from estimation of serum vitamin B12"

cabdirect.org/cabdirect/abs...

"Dr C was also the first to note that folate levels in the blood are far more affected by B12 deficiency than by folate intake"

That must have been more than 50 years ago...

sciencedirect.com/science/a...

[Sleepybunny in reply to fbirder]

Hi fbirder

Having a bit of a brain fog day.

Can B12 deficiency lead to folate deficiency and if so, can you explain simply how that happens or does it lead to to folate accumulating in the blood?

Thanks

[fbirder in reply to Sleepybunny]

Too little B12 can lead to what's known as 'The Folate Trap'.

All the folates are converted into other folates in a big cycle (well, a few cycles). See here for the diagram - frankhollis.com/temp/B12%20...

One step of the cycle involves B12 - the conversion of methyltetrahydrofolate into tetrahydrofolate. This happens during the conversion of homocysteine to methionine. A molecule of cob(I)alamin (formed from B12) is required to accept the methyl group from the methyltetrahydrofolate and pass it on to the homocysteine. If there isn't enough B12 then there isn't enough cob(I)alamin and not enough methyltetrahydrofolate is converted to methylfolate.

If this situation lasts long enough then almost all of the folate in the body gets trapped as the now useless methyltetrahydrofolate. The person suffers all the problems with folate deficiency, despite having normal levels in their blood.

The folate trap doesn't increase the levels of folate in the blood. Unless they start taking supplements (to try and fix the symptoms) then more folate gets trapped as methyltetrahydrofolate and the symptoms don't go away.

[deniseinmilden in reply to fbirder]

This is a brilliantly concise way of explaining lots of the problems I've had. Does the methyltetrahydrofolate eventually get broken back down once there is enough...? B12 available? Or is something else required? Or does it get stored? Or eventually excreted as whole molecules? Or???

[fbirder in reply to deniseinmilden]

Once there is enough B12 present then the amount of methyltetrahydrofolate will start to decrease as it is converted to methylfolate and then to the other important folates.

It wouldn't get excreted because the body has developed to keep hold of its folate.

[deniseinmilden in reply to fbirder]

Thank you very much for your help. Would you mind answering a few more questions for me, please?

What would happen if you didn't get enough B12 and it wasn't ever broken down? Does it continue to build up? Where is it stored? Does it give specific toxicity symptoms?

How come I needed to take methylfolate in huge quantities until recently? When I first did my jabs folic acid was fine and then suddenly it stopped working and I had to have methylfolate to survive.

I still need a bit occasionally (depending on diet and absorption rates) but mostly only need folic acid again now, as judged by symptoms:

normal folate deficiency symptoms are corrected with folic acid

painful knees and cloying fatigue in addition to the normal symptoms are resolved with methylfolate

too much methylfolate = headache from hell.

I do appreciate your help.

[fbirder in reply to deniseinmilden]

It's really difficult to find information about methylfolate, because there is so much crap about it on the interwebs.

It will be excreted in the urine and bile (although some of that will be reabsorbed). So levels will build up to a certain extent. I can't find out how high they can go. It will depend strongly on the rate it is consumed in food or supplements.

This article describes an investigation into using methylfolate instead of folic acid for adding to foods - efsa.europa.eu/sites/defaul... - They seem to think there's no harm in taking 1 mg per day.

There is obviously a lot they don't know about methylfolate. My experiences certainly surprised me.

When I was first diagnosed with PA I started investigating. I found that folate was important, then I found that a certain mutation could mean that methylfolate was important, then I found that I had that mutation. So I started supplementing with methylfolate (July 2015).

As I did more research I found that almost everything about methylfolate and MTHFR was rubbish. So I decided to stop using it and swapped to folic acid (Nov 2017). I couldn't really tell if it made any difference so I went back to methylfolate - just in case (Feb 2018).

Then something rang an alarm.

Before I was diagnosed I'd suffered horrible osteoarthritis. From the mid 1980s I would have three of four periods each year where one joint (a knee, wrist, or ankle) would swell, become red and very painful. I was told it was gout (except that it wasn't painful if the joint was touched, only if it moved - and I had gout in July 2018 so I now know for sure it wasn't that). I was told it was my weight (I asked by that might affect my wrists).

But when I was diagnosed, that all stopped. It took almost a year for me to realise that I hadn't had an attack. I assumed it had been B12 related and I was cured.

Until the winter of 2017. The arthritis came back with a vengeance. It attacked my wrist and I couldn't turn the pages of a book. Then it went for my knee and I had to buy a zimmer frame. It was depressing.

But, as quickly as it appeared it went again. By late spring 2018 I hadn't had an attack for a couple of months. In May 2018 I realised that the arthritis had flared up during the period I had swapped to folic acid! Indeed, throughout all of the times I've been taking methylfolate (July 2015 to Nov 2017 and Feb 2018 to June 2019) I've not had a single attack.

Now this is anecdotal, to be sure. But it's convinced me, I'll be taking methylfolate until I die.

So, who knows what it's doing. It's obviously a lot more complicated than we know.

[deniseinmilden in reply to fbirder]

Hi!

Thank you for taking the time to reply to all my questions - it really helps.

I've also had a problem finding useful articles on it and the best (most practically pertinent) information I've had so far has been from Gambit62 - who, in a life-saving reply when I was desperate, suggested I try it in the first place, and who also gave me the information on the headaches - and yourself.

I'd had similar experiences with osteoarthritis - especially in my knees and where my carples and scafoid join my wrists.

I remember you mentioning it when I had an especially bad attack last year (having had Trimethoprim antibiotics). I was trying to prune out the lowest branches on the orchard and I was nearly passing out with pain if I had to get down to saw. I tried increasing the methylfolate and got a steady improvement. With my general malabsorption problems it's impossible to say how much I was actually getting but I was taking 20+mg for several months. Eventually my joints became fine and then I started getting the methylfolate headaches again and so cut back. I currently am doing well on about 500mcg a day (less than one fortieth of what I needed this time last year!

A life-long science worshipper, I find it really unnerving to "throw away the rule book" and treat myself against the science and according to my symptoms - even if I do use proper trial principles when doing it and am always aware of the possible placebo effects.

While I am a great believer in prognosis - if you don't survive in the short term, there's no point worrying about the long term - I was curious to know if I could "look forward to" any future problems from a possible methyltetrahydrofolate build-up as a consequence of taking the methylfolate or if it would just harmlessly break down and I'd "get away with it"!

The headaches feel like horrible poisoning (and they obviously are!) and nothing touches them (even if I KNOW I've managed to get some analgesic into me) and so I wondered if the methyltetrahydrofolate somehow ended up in your brain or did something specific that consequentially caused the poison headaches.

Also there must be some mechanism which determines the rate of the cycle because sometimes (like last summer) it goes in and out of my system so fast I can't actually get enough to get a headache (!) and then if I do, it's gone quickly. At the moment the cycling is much slower and I have to be careful to judge it right between osteoarthritis and headache because if I get a headache due to too much (and I can misjudge it if I supplement and then eat something more folate-rich than I had planned to) it can take a while for the headache to wear off.

I can't help but wonder what is influencing this rate - I guess it's probably something to do with levels of things in my body or an autoimmune response or something!

I'm also intrigued how drugs like Trimethoprim and Methotrexate pull the folate out of your body as I feel that may give us some answers too.

Sorry I've been rambling on and thank you again if you've got this far!! 😁

[deniseinmilden in reply to fbirder]

If he did his research on it about the same time that he did his pioneering work into thyroid issues then 54 years ago would fit perfectly. My friend is almost 80 and his work saved her life when she was in her late 20s.

I'm intrigued as to why you are so sceptical about his work, much of which has been ground breaking and has saved and impoved the lives of countless people?

Is it because he questions the received wisdom of the day? As we know from lots of people's comments on here, everyone is different and lots of us don't fit the current science. The only way to improve the situation is to recognise that not all the science has been found yet and the only way to discover more is to look at anecdotal observations and question why the science to date doesn't fit the reality.

I support scientific discovery wholeheartedly but good science always challenges things to try to find out more.

[deniseinmilden]

Thank you Sleepybunny

[deniseinmilden in reply to deniseinmilden]

This is really helpful.