Personal Story
Mike Lynch
I was always fit and athletic when young, I boxed for a short while and shortly before the accident, I joined Luton Harriers athletics club with a view to fulfilling my dream as a long-distance runner. However, the car crash stopped any hope of an athletic career although I did manage quite a few half marathons with one leg shorter than the other and imperfect leg joints later in life.
Obviously, there was concern by my family as I had now two TIA’s. The cardiologist was of the same view and despite several tests, they could not find an irregular heartbeat. However, we forced the atrial fibrillation by removing all medication, going for a long ride on a push bike and drinking wine and coffee! So, it was atrial fibrillation. I was then sent to a specialist for an ablation procedure which involved access through the arteries into the heart and burning the electrical pathways of the heart to stop the irregular heartbeat.
The atrial fibrillation stopped, but I got worse. The tiredness was now profound. My GP tested for vitamin B12 deficiency, negative. This was the first I understood that vitamin B12 deficiency could be a possible cause and investigated further. At this stage, after spending £25,000 on private investigations and procedures, I googled all my symptoms and discovered the Pernicious Anaemia Society.
I have never been formally diagnosed except the cardiologist stated repeatedly that I have vitamin B12 deficiency on the letters back to the GP. I have been injecting vitamin B12 for 6 days per week since 2013. My GP did ask recently if I was still injecting, and I responded in the affirmative. As I inject every day it is pointless trying to get a diagnosis by stopping treatment for 4 months for my red blood cells to show the deficiency, so I am happy to continue as I am.
I buy syringes from Amazon, I get my hydroxocobalamin from Germany and I inject into the belly fat which I understand keeps the B12 in the system for longer than an intramuscular injection.* This costs only pennies per injection, and I am happy to continue doing this as the bureaucracy of the NHS will not be able to assist (in my opinion).
Due to the damage caused by the car accident I have had multiple operations, at the time and from about the year 2000. I do not believe this is anything to do with vitamin B12 deficiency. However, in 2016 I had my aortic valve replaced, and as cardiovascular issues are a symptom of vitamin B12 deficiency, this is a direct cause. There will be a need to replace the aortic valve when it wears out, which could be in about 5 to 10 years. This will be replaced with a valve which is inserted via the arteries which could last another 10 years. So, I could live for another 15 years or so, which is normal life expectancy but not in great health.
I also have a thyroid issue, which is common with people suffering from B12 deficiency. This is an issue for the family generally. My Grandmother had hypothyroidism (and lived to be 100 years old), I am one of 7 children, 6 of us have hypothyroidism and 3 of the 6 need to take T3 medication. We do not seem to have a family issue with vitamin B12 deficiency, although I suspect my maternal side in Ireland may have done so as a lot of the uncles and aunts tended to fade away and die young.
I would recommend to anyone who has or suspect that they have vitamin B12 deficiency, to start treatment immediately whether through your GP or self-administered. You must stop the damage in its tracks so you can live your life.
I believe I would have died without the assistance of the group from the Pernicious Anaemia Society, I will be forever grateful. Whilst the damage is irreversible, it can be halted and that is where I am and have been for the last few years. There is light at the end of the tunnel…..