My journey probably started way before I even knew there was a problem. I believe I had been deficient in B12 for at least six years before it was finally diagnosed… and even then I didn’t get a definitive yes you are! Why? … due to the shear lack of training and education within our Health System surrounding B12 Deficiency and in particular Pernicious Anaemia.
I started to feel very unwell over a period of maybe six years, I started having excruciating migraines, my stomach was rotting, and I felt so tired it was more than just lack of sleep or energy I was literally falling asleep and unable to function normally. I visited my GP on several occasions who conducted so many blood tests and eventually referred me to a specialist in Leeds. They’re opinion was I had IBS and sent me away with …. wait for it… Diarrhea tablets – even though I told him I actually struggled to go… not the opposite. I knew I didn’t have typical symptoms of IBS, so I didn’t give up. I must have seen every GP in the surgery – and not one tested my B12! Why??? Because it isn’t part of the Full Blood Count – you have to request it separately.
I then moved to Cumbria and again my health continued to deteriorate to the point where I was losing my speech, couldn’t form words and just wanted to sleep all the time, I was having panic like symptoms and suffered a week-long migraine which caused me to lose my speech for nearly six weeks. I visited my GP god knows how many times, I was told I was depressed, given countless medications for my migraines, but the worse bit was when I was told I had MS – Mrs Marsden I am going to send you for a brain scan and I want you to prepare yourself that it will come back that you have “White Matter “ on the brain. Can you imagine!!!! Anyway, I had the scan and I didn’t have MS Thank god!!!
Through the GP’s testing I found out I had H-Pylori a very common bacteria that lives in the gut and basically destroys the gut wall. I was given very strong anti-biotic which eradicates this bacterium which did clear up. That was the last I thought about that and there was no follow up with the Doctors. But it later turned out, that either the H-Pylori or the nasty anti-biotics triggered an autoimmune response which lead to the destruction of my stomach wall.
While this was all going on I did extensive research of my own – narrowing other things down, researching my symptoms. It was through this research that I came across a lot of articles about H-Pylori and the links to Pernicious Anemia. H-Pylori can lead to Autoimmune Atrophic Gastritis. Given that I have had other autoimmune issues in the past .. alarm bells started to ring. So… I booked yet another appointment with my GP and insisted on seeing a Gastroenterologist as I wanted the camera into my stomach.
By this time, I was really ill, the panic attacks were daily, the brain fog, the forgetting words, not being able to say what I wanted to say, memory loss, forgetting I had been on days out, and I will be honest I actually felt like I wasn’t even here.
I went for my Endoscopy and the specialist advised me that I had Atrophic Gastritis (Basically thinning of the stomach lining) at this point it was Chronic Acute Gastritis – now I knew that this diagnosis meant that I had lost my intrinsic factor and would need B12 injections for life (because I had done my research). Your intrinsic factor sits in the lining of your stomach and you need intrinsic factor to convert B12 in the body to a usable form. Guess what though … even the Gastroenterologist didn’t recognise B12 deficiency and didn’t initiate B12 injections! Wow !
After this diagnosis I joined the B12 charities and contacted Martin Hooper the Chairman and ask for advice. He advised me on the correct protocol for treating B12 Deficiency and warned me that the GP’s do not follow guidelines. Guidelines state that loading doses should continue until all symptoms have stopped. I also came across a man called Dr Chandy on the internet.. a GP from County Durham, who incidentally had been struck off the GMC for treating people with B12 injections and had successfully cured people diagnosed with MS. I was so intrigued by this man and he clearly had a lot of knowledge surrounding Pernicious Anaemia I went to meet him. What an amazing experience. He showed me case study after case study of people he had treated and regained their mobility due to wrong diagnosis, when in fact a simple B12 injection could have cured them. Dr Chandy believes that the big pharmaceutical companies are not interested in B12 as it is a 60p injection, think about the money that is in MS Drugs and Anti-depressants !!!! Wrong isn’t it!
I continued to deteriorate and I had stopped working by now, I could no longer do my job. Being on the telephone interviewing candidates was impossible, I would stutter, break into panic attacks and basically couldn’t even function.
The final time I went to the Doctors I broke down and said … this is wrong I need help. Right there and then my GP had no hesitation and gave me a B12 Injection there and then. He then actioned my loading doses which were over a period of weeks. Mr Hooper was right though the loading doses stopped and then I was put on a maintenance dose of 1 injection every three months. Anyone with this illness will tell you that this is shocking, this is nowhere near enough, in fact a dog with the same illness gets an injection once a week (you might say its because it’s a money maker for the vets… no… its actually because animals get treated way better than humans and I got that information from a Vet in Glasgow that I met on a trip away)
So my journey then began in extensively researching my illness. I read haematological papers, I joined support groups on Facebook, I contacted the charities, I stayed in regular contact with Dr Chandy and this research turned my life around. Dr Chandy advised me that ideally, I should have daily injections until my symptoms improved, there was no way the GP’s were going to allow this as they have to stick to the guidelines. These support groups taught me that if I was going to get better I had to take my life into my own hands. B12 is available over the counter in most European countries… but oh no .. not in the UK. If you can imagine it the same as a Diabetic. I need B12 just as much as they need insulin. yet I cannot buy it in the UK over the counter and I am restricted to one injection every three months despite there been no evidence to back this up – NO RESEARCH!!!
B12/Pernious anaemia took over my life – I read absolutely everything I could about it…. And I absolutely became obsessed with it.
My research brought me to the point I realised to get better I must self-medicate. My family were against it, I had to really educate my husband …. After all everyone wants to trust their GP right??
So just like many others with my illness I bought my B12 from Germany and started self-treating, the first time I injected myself (using Insulin needles), I wont lie I nearly passed out. But then I just got used to it. It took about six months of daily injections for me to improve, and I gradually reduced the injections to every other day. I could not drink alcohol as it sent me back into panic mode and I learnt that Alcohol depletes your B12.
Three years later I am now on once a week injection and 90% improved. When I did start treating myself, my stomach which had been distended due to lack of movement completely calmed down and went back to normal, my memory returned, my speech improved and the numbness I had in my leg stopped progressing. But most of all it was like I had woken up, for years I had felt in a day dream… not actually in the room!
This journey has been horrendous, and I wouldn’t wish it on anyone. When I joined my support group on Facebook three years ago there was 1.5K members there are now 18.3K members! I have registered as a support member so if anyone wants advice I will travel to meet fellow suffers. I wrote to Jeremy Hunt, Theresa May and Tim Farron about my story of misdiagnosis and how B12 should be available over the counter…. All I received was a standard reply. Tim Farron on the other hand did reply with his disgust and he too wrote to Jeremy Hunt. Sadly nothing came of it.
PLEASE NOTE: ANYONE WITH PERNICIOUS ANAEMIA SHOULD NOT TAKE B12 TABLETS.. YOUR STOMACH CANNOT CONVERT THEM