I think I actually shouted at the lady on the phone yesterday. Not because she annoyed me but because I couldn’t couldn’t control my anger and frustration. You’d have thought that because I get so many of these phone calls I would be getting used to them but this one really annoyed me.
What would Addison make of this?
The recent newspaper and magazine coverage has meant that not only has the number of members joining trebled (we are getting on average eight new members every day) but also the number of telephone calls to the society has also increased dramatically. On one day last week I had twenty three telephone calls to make to people who were suddenly aware of our existence due to the publicity. Some of these calls are quite harrowing and they are nearly all very frustrating as there is only so much advice that I can offer. Towards the end of the calls I feel emotionally drained. Yesterday’s call was the fourth of seven that I picked up from the telephone
answer machine.
“My father was told thirty years ago that he had Pernicious Anaemia and would need B12 injections for life” said the voice at the end of the phone. “He’s seventy and three years ago a new doctor at the surgery told him that he would no longer need the injections as his blood was now normal” she said. I sighed.
“But if your father has Pernicious Anaemia he will need injections for life” I said. “If he doesn’t then he will become gravely ill”
“He is gravely ill” she said. “He’s in hospital and the doctors have said that his nervous system is completely shutting down”.
That’s when I became angry. “Go to your father’s GP. Make an urgent appointment or just turn up and demand to see him. Tell him you have spoken to me. Ask him to put in writing why your father’s B12 injections have been stopped. Go to the hospital. Tell the doctor treating your father what you have told me. Tell him or her that you have spoken to me. Tell them that your father was diagnosed as having Pernicious Anaemia thirty years ago and that three years ago his injections were stopped”.
There was nothing else to say or do. I hope to hear from the lady today to let me know what has happened.
Hi Martyn – I was one of those people you called on Monday 2rd September. You gave me advice about my sister who is extremely poorly. Although she is too ill to travel to Cardiff, I took your advice and guess what – I managed to get her an infusion locally yesterday!!
There’s a log way to go and I don’t know if the effects can be reversed but this is the first step – time will tell and I’m still going to have to work out what to do next
You are doing amazing work and I just cannot thank you enough for selflessly giving your time. I hope you know how much difference you are making to so many lives.
Nice to read. I am a PAS-member living in Norway, I order lozenges to use inbetween injections. Maybe your sister could also benefit from them ?
Gunhild
My sister has been recently diagnosed with this condition and now I’m being tested after 8 years of debilitating illness which I related back to a tick bite in 2005. Unfortunately bloods proved negative so was told chronic fatigue/fybromyalgia. 8 years of being bedridden and housebound (I’m 48) and I’ve come across this lovely man Martin Hooper and am reading his book. Without his help lots more of us would continue to suffer in silence as no real answers are given to us by the medical profession.
YES THERE IS SOMETHING YOU CAN DO! You can buy 10,000 microgram tablets on the internet – for instance, Superior Source methylcobalamin 10,000 mcg tablets are sold through Amazon. Even in those who do not absorb normal small amounts of B12 from their diet, about 1% of these very high doses is absorbed. If you take 10,000 mcg a day, that about 700 mcg a week will be absorbed.
The Dutch medicines book, Farmacotherapeutisch Kompas http://www.fk.cvz.nl/, states that people with neurological abnormalities through B12 deficiency should receive 1-2 injections of 1000 mcg hydroxocobalamin each week “for instance for two years”. 3 tablets of 10,000 mcg daily would be equivalent to 2 injections a week.
To my mind, the results of a trial of treatment are as good as any of the laboratory investigations to prove B12 deficiency.
In the US (online CVS Pharmacies) and the Netherlands you can buy 10,000 microgram tablets in the High Street chemist – cheaper than on Amazon.
If you see a relative going downhill and the doctors are not doing anything, you can give them tablets. Don’t sit by doing nothing while they develop irreversible damage!
Also, you could lodge a complaint to the hospital or the Primary Care organisation. Or even the ombudsman. I am a GP and I have never heard of a guideline to stop B12 injections in someone with a proven deficiency. Treatment is lifelong.