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What a Difference a Brain Makes

Thursday, 06 February 2014 09:36

Written by Loren

Jab day, oh, do I look forward to it! The hashing of the song lyric above, is what goes through my mind each time. I will even accept an early morning appointment just to feel better. I have never been a lover of needles but I can say for sure I would inject myself with no problem because the difference it has made to my life, for even just a few weeks, is tremendous!brain fog2

So, what's so good about Vitamin B12?
Isn't it just the new in thing that everyone is raving about - a celebrity fad?

There maybe some celebrities that use it to boost their energy levels, but actually having a Vitamin B12 deficiency is serious, as it damages the body in many ways, sometimes irreversibly so. 

B12 is a vital component along with folate (B9) which works in tandem with B12 to keep our digestive system healthy - maintaining the brain and nervous system, as well as the formation of blood. Your body uses B12 for metabolism, fatty acid synthesis and the production of energy.

I am not going to go into depth here because there is plenty of information on the internet already on this, but here is a link that will really help you understand what B12 deficiency is.

Recently, I started to have severe dizzy spells to the point of almost passing out, even when sitting still or lying down not moving. I had these before a few years back, before I was diagnosed with the deficiency, I'd also go off meat for some reason. But this time I was also experiencing palpitations that went from flutterings, to like my heart was trying to escape my chest. Not at the same time I might add but within the same period. I felt really poorly too, just no energy, muscles and joints refusing to cooperate. "I shouldn't be experiencing this if I have had my jab", I thought.

My previous B12 blood test had shown greater than 2000ng/l, normal ranges are from 200-900ng/l. After going to my doctors and having a battery of blood tests as well as an ECG, all came back as within the "normal ranges" except the B12, which still continued to be greater than 2000ng/l. "No further action" I was told, when I enquired about my bloods a few days later. A typical response which I hate, but it is a normal occurrence when you have been diagnosed with M.E. - the "it's all in your head" syndrome you get the feeling the administrator is thinking, as she reads your results.

So, I decided to a search on the particular symptoms, and low and behold, I was directed to a website called that had many different ailments listed, but this particular one was from someone on the Pernicious Anaemia Society (PAS) forum.

It seems that there are others who have suffered this symptom, but it's not to do with too much B12, it's more likely it's not being absorbed in to my system - as well as other factors such as Folate, Ferritin (Iron) or Vit D3 to name a few, maybe very low. You've heard of homocysteine, well it's not good and it can increase if these are out of whack.

I was advised to make sure my levels of those were a good rate, and not just border line - especially my folate levels they should be at least 8ug/l! My Folate levels were 3.4ug/l (2.8-19ug/l) in 2013.

I did take about one fifth of the Holland and Barrant Folate tablets (400 µg) I bought. I had read it would help improve the sense of taste (or in my case lack of), that I had been experiencing for many years (and that did work!). If the doctor had been clued up, the procedure would normally be to prescribe 5mg of Folate a day, for 4 months! My latest results did show an increase to 6.4ug/l but it was still not at the 8ug/l threshold, as recommended here. Useful information if you need to go to the doctors and convince them that being in the "normal ranges" is not enough!

Goodness knows what my Vit D3 or Ferritin levels are, can I get an appointment to see my doctor to find out? None available for 20 days! 

The past few days I have been looking back over some old medical records I'd copied years ago (very handy!). I was diagnosed with the M.E. in 1999. It was later confirmed by The National M.E. Centre at Harold Wood Hospital in 2001 (it was a very long waiting list). It was run by the top M.E. Neurological physician Professor Findley. Finally a decade of battling with fatigue and the other symptoms someone confirmed what I had - I am not so sure now as I have only got worse over the years. Yes, you can put it down to other things, mystery illnesses, diet, stress etc. but you know when something is not right, and I have felt that for a very long time. Some of you might relate here!

Anyway, I came across a letter to my doctor from the hospital with some blood results on, it states: "Folate, Ferritin, and B12 were in normal limits, although the Ferritin is tending towards the low normal range at 70mcg/l (18-370mcg/l)." They didn't state the actual range of most important ones but basically they were saying I was erring on being anaemic. I don't remember being prescribed any treatment for it. In fact all they wanted to do is give me cognitive therapy.

My mother was terribly anaemic, in fact while I was being carried, she had to have an iron drip and a pint of it was put in her system. Did this have any affect on me? It left me wondering. Then yesterday morning probably because I had probed the darkest recesses of my mind; just after I had my jab, I had a flash back to when I was about 17. I was suffering from dizzy spells, just like now. I was told then it was probably me getting up too quickly, blood pressure might have been a bit low. Dismissed basically. With this, I started to cry and questioned my mind, have I been anaemic all along? Well, we will see when I do get to have my bloods done again and if this is the case...

Some readers at this point might be thinking a good diet normally corrects this sort of problem, as so many have said to me over the years. Maybe it has a bit, but I have always eaten good nutritional food - more of the kind of foods most people turn their nose up at. Yes, I do eat crap at times, but my body can't take it for long - If you have a malabsorption/metabolic problem of course, possibly genetic or damaged by other factors, then you are not likely to know that, it's not something you can push for on NHS, and who has hundreds of pounds to do tests privately? This is where I realised how much I assumed my doctors knew how to treat me. Instead, if this is the case, then they have swept all my symptoms under the M.E./C.F.S. umbrella for years.

That thought has made me angry, but it's an emotion that serves no purpose as it's a pointless exercise thinking you have wasted most of your life on what could have been. Looking on a brighter side at least it can be treated over time and if anything I written here can help someone else who may come across this, then it would not have been in vain. And who knows, maybe there is a reason for that; I often liken myself to a tortoise, maybe that was the plan to slow me down enough to actually see things, that others who were more Hare like would miss.

Are people being wrongly diagnosed?
There are many others like me, hundreds of us who are not being treated properly, and have similar battles. Interestingly, many of them suffer from M.E./C.F.S. and Fibromyalgia too. Unfortunately, many people who are borderline deficient are often not picked up, nor treated properly. Even when they have been diagnosed, it has lead a lot of people to take matters in their own hands, as there's this idea within the medical profession that B12 is some wonder vitamin that we don't really need. Most don't know that in the 1800's, a baby would not live longer than 3 years, some far less!

If you have problems with your GP with your injections and frequency of them, tell them to look up BNF section 9.1.2 and the NICE guidelines, that might make them sit up and listen and take lots of printed off info with you to make sure you mean business!

For more information on B12 deficiency and Pernicious anaemia there's a really supportive Facebook group.



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