JACKIE'S STORY
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MY B12 JOURNEY
My story really begins, I believe, in my 30’s when I started to develop vague and difficult to describe stomach pains. I was back and forth to my GP who over the years prescribed Zantac and Losec – neither of which did any good.
As the condition became more uncomfortable he decided to treat me - twice - for heliobacter pylori. On the second course of antibiotics he remarked that “you do realise this is very expensive, don’t you?” Not exactly helpful! When this didn’t provide any relief I was sent for an endoscopy which didn’t show up anything either. I was told I would just have to live with it as they couldn’t find anything wrong.
The stomach issues rumbled on, year after year. I would HAVE to eat often, as I would suddenly get a feeling of raging hunger. I eventually learned to accommodate it but was never really free of it. Then in 2011, I had a conversation about it with my wife. I mentioned to her that I could bite my tongue quite hard and not feel it, had a slight numbness to my sense of touch, no sense of smell or taste, frequent pins and needles and, of course, the stomach pains were still there. I was also experiencing tiredness, memory loss, short sharp stabbing pains anywhere in my body and severe muscle spasms, even though I had been on quinine for years.
She decided I needed to see my GP. I had moved house by now so I was at a new surgery. They felt it needed looking at and drew blood. They neither mentioned Pernicious Anaemia, nor did they say what the blood tests would be. I duly rang back a couple of weeks later and was told to have bloods drawn again a month later. I didn’t question it, I was born into the era of those who trust what the doctor says. After the second results were in I was told I needed to have B12 injections for life, because I had Pernicious Anaemia, but it was OK, nothing to worry about, it “wasn’t the auto immune type”. I was to have either 5 or 6 injections over a fortnight, and this would be followed up by an injection every 12 weeks.
It all seemed to be OK, but I would get tired before my next injection was due, and nothing happened to the pins and needles, numbness, loss of smell etc, but of course, the doctor had said I’d be alright so I didn’t bother to query it! We moved house in May 2013 and went to a new surgery again, and my symptoms were beginning to worsen.
By Dec 2014 we had started researching things on the internet and were absolutely horrified by what we found. For a start the diagnosis was completely inaccurate, Pernicious Anaemia IS the auto immune form of B12 deficiency. No one had EVER mentioned folic acid (I was on the low side of normal), and my worsening symptoms, by now including confusion, light headedness and brain fog, were indicative of neurological damage.
Armed with this new found information we returned to the surgery and as soon as we talked to the doctor about it he decided that new blood tests were needed. We hadn’t done enough research to know that this was a waste of time and against guidelines, so when the tests showed a sky high level of B12 we almost believed our doctor when he claimed it wasn’t B12 deficiency causing my worsening symptoms. He arranged for us to see a haematologist. Whilst we waited on that appointment, we did more research, joined several self help groups, met Heather Hardie and learned, and learned, and learned. So, when we finally got to see the haematologist and she came out with the usual ‘you have enough (B12 stored)for 2 – 3 years’, followed by “whatever it is, it isn’t B12 deficiency”, then alarmingly she stated “the blood test is crap but I’m going to use that as a basis for treatment anyway”. She REFUSED to allow my wife to speak on my behalf even though I was so confused I couldn’t hold a proper conversation by that time.
We knew by then that we were on our own in our quest to get me treated. So, we searched for a decent neurologist and saw him privately. However, the search for him took so long that I simply couldn’t cope, and we took advice from the self help group and ordered the equipment and supplies we needed to self inject. My symptoms were getting so bad, and very quickly, that we bypassed the normal loading dose regime and went for it! 1000mcg hydroxocobalamin, intra muscular every other day, and on the intervening day, 1000mcg methylcobalamin, sub cut. I also took 12x400mcg folic acid daily. Within 4 weeks I was almost back to normal.
When we did see the private neurologist he wasn’t at all surprised at my improvement, and said he would write a report to my GP recommending he implement a 4 weekly injection.
Now, I am free of all breathlessness, all arrhythmia, pins and needles, my sense of touch has almost entirely returned and I no longer have the most awful digestion problems although I still have to be careful with my diet. My head is clear, no more confusion or brain fog, and my memory has improved greatly.
It was because of the lack of good treatment, the obvious lack of knowledge in my previous GPs and the haematologist, and the inability of the NHS to ensure that complaints were adequately dealt with along with the abysmally poor training they give their student doctors, that my wife and I were delighted to join forces with Heather and Cindy and start up this charity, The B12 Society.
As a footnote, when I returned to see my GP following my one month course of self treatment, he was quite astounded at the difference in my health! We talked to him about the aims of the Society and he was very positive about accredited training being given to GPs nationwide. We were able to assure him that the Royal College of General Practitioners (Edinburgh) are wholly behind our venture and he was duly impressed!
Jackie Leihne