I have been doing some research and it all confirms what my Consultant told me 40 years ago. There were three men Minot, Whipple and Murphy who worked on this and were awarded the Nobel prize for discovering that Pernicious Anaemia was different from ordinary Anaemia. They used to give patients liver (up to half a pound a day!) This did help with it, but it was not until 1948 that the 'water soluble' item was found. There is a great deal of information that I think our doctors should read. I just typed in B12 1940s, and it brought up loads of information to read. Many people died because of Pernicious Anaemia. And, it IS caused by the stomach not having the Intrinsic Factor and therefore it is unable to absorb oral B12. I do not think that a lot of doctors understand this, maybe have not been educated about it (that sounds awful, I know!) So, we really do NEED our B12. If you like to know more about it and how it was discovered Goggle it. It is very interesting. Also it showed the symptoms of lack of B12 which many of us have had and has been put down to other reasons and not lack of B12 through Pernicious Anaemia. This is what I found.
I hope this does not frighten people but I am sure if the Moderators do not think it appropriate to write all that I have written they will remove it, but I sincerely hope they do not. So, do not give up. We know our bodies. Good luck to all of you.
tiredness
shortness of breath
shiny or smooth, red tongue
pale skin
chest pain
numb feeling in the hands or feet
balance difficulties
poor coordination
slow reflexes
confusion
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briarhillcat
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It just is the same as the Consultant told me years ago. I was diagnosed with it when I contracted Ulcerative Colitis (and also Crones and IBS can be responsible too. I do know that thousands of people died from it. The massive doses of liver did help, but of course, that is oral., and it does not work due to that missing intrinsic factor in the stomach. There is so much information on Google about it. And the very fact that those three men got the Noble prize shows that is is very real indeed and Medical people today should know about it. Take care anyhow, and Stay Safe. Briar Hill cat.
Minot, Whipple and Murphy did some amazing work and were justifiably rewarded with the Nobel Prize.
William Bosworth Castle did a further piece of groundbreaking work which resulted in the discovery of 'Intrinsic Factor'. It was assumed there was an 'Extrinsic Factor' which we now know as Vitamin B12, and this needed an 'Intrinsic Factor' [which we now know as... yes, you guessed it!] and the experiments Castle conducted using 'raw hamburger meat treated with normal gastric juice' were extraordinary, and would be unlikely to ever get Ethics Committee approval nowadays.
For anyone interested, then start with 'William Bosworth Castle' and see where it takes you. It's fascinating.
Rosalind Franklin - should have got the nobel prize for the structure of DNA, but died of cancer, possibly caused by the X-Rays she used.
Jocelyn Bell Burnell. Discovered pulsars. Would have had the nobel prize but it went to her supervisor instead. She never seemed that bitter about it. Lovely lady.
Lise Meitner. Did lots of the early work on radioactive isotopes with Oliver Hahn. She was nominated for the Nobel prize (in chemistry or physics) 48 times and never got it, probably because of the poisonous combination of being both female and Jewish. Hahn got the prize for chemistry in 1944.
Emily Noether. A German mathematician that nobody's heard of. Noether's Theorem underlies much of modern subatomic physics including the theory behind the search of the Higgs Boson.
Henrietta Swan Leavitt - An American who figured out the first step to measuring the size of the universe. It was her work on cepheid variable stars that allowed Edwin Hubble to determine that the universe was expaning.
I’ve always wondered if Margaret Thatcher developed dementia due to her lack of sleep. She boasted of only needing 4 hours sleep per night. Lack of sleep can cause autoimmune conditions, which if not addressed can lead to dementia. Just my thoughts, I’m not medically trained.
I often wondered why my mother forced me to eat so much liver ,advised by doctors apparently but never explained to me as a child. I was born 1956 and have vague ,early childhood memories of visiting consultants , having blood tests at Lewisham hospital as a very young child. I really would like to know more details as to what they were treating me for. Can the Pernicious Anaemia I suffer now be related I wonder.
Thank you for your post. Relevant history is always interesting
That’s what ‘pernicious’ means - ‘fatal’, which Pernicious Anaemia always was before M W & M; and even afterwards, for those who couldn’t absorb enough (or any!) B12 from the liver they were given.
But the name has stuck, despite it no longer having to be a death sentence; and the name makes it sound like something from the 18th century that should have been eliminated long ago. I wonder if the name holds us back because of that; would the PAS have better luck as the B12d Society, do you think?
No - because with "just" B12 deficiency (which is, after all, what people with PA suffer from), you have no clout at all !
Yes, pernicious anaemia sounds like consumption or the vapours, but at least you have a diagnosis. People with B12 deficiency have been, and hopefully always will be, welcomed by the PAS . Symptoms exactly the same.
Don't forget, many people with PA had to wait over 10 years for their diagnosis, during which time they were.......
Hi, no I think we need to keep the Pernicious part. It indicates just how dreadful this condition can be to those suffering from it. If it’s seen as just another Anemia people will think ,ah take iron. Most don’t understand the seriousness of the condition and it’s impact on people’s lives and wellbeing, including many GPS!!!
Can’t believe GP’s are still so ignorant about this. When I went to see mine in full argument mode after being denied, and made the point that thyroid problems go back generations on my side and now my daughter has it, he backtracked and straight away reinstated it on my records.
As my nurse told me, they are being told to cut back due to youngsters ‘faddy diets’. Why not wean them out first.
There’s no way I would self inject as wouldn’t trust where to get it safely.
I will be printing your comments out and keeping them on me at next appointment.
My daughter had also told me that there are youngsters with 'faddy diets' wanting to get thinner and indeed I saw two videos of young women smiling and saying "I must make sure I get my B12 injections. Need to keep thin! My daughter said that is possibly one of the reasons the doctors just do not know or care.
Where to get B12 safely is the last thing you need to worry about - the German sources are impeccable, state regulated, online pharmacies selling essentially the same products the NHS uses, and operating under proper safeguards.
The provenance of B12 ampoules is far more clear-cut than that of oral B12 supplements, which aren’t even regulated as medicines, only as foodstuffs.
That is fine, as long as you can get them through the NHS, but if not that is different. I did my first self injection a month ago and it was fine. People on here are so helpful. Good luck. Please do not leave it too long if you cannot get them at your surgery.
I know I desperately need B12 as my life is just sleeping and no energy when I'm awake. The deficiency also runs in my family. I'm just so very scared of self injection. Is it easy ?
Hello, I am sorry you are not feeling well. I have started self injecting after my surgery said no more B12 for a YEAR. Many doctors do not understand the need for our injections. Our bodies NEED them. I ordered my B12 solution from Germany and needles from Medisave, and then I practised on an Orange! I know that sounds weird, but I wanted to make sure I did it right. I was OK with that, and then when the time came, I just laid out the needles and B12 solution and wipes and re-read the instructions which a kind person on here sent to me (there are also videos to see on the web) and I did it! I felt so pleased with myself. It is a bit scary thinking about it, but you can do it!. Take care and remember we are all here for each other. Briarhillcatx
My Mother has memories of my Great Grandfather eating platefuls of chopped raw liver. it seems like it slowed the decline but it ultimately killed him. (this would have been in the late 40's early 50's). She was diagnosed many years ago with PA and has been having 3 monthly injections since. My sister and I are also both on our own b12 injection cycle. For some reason I never thought much of the story of plates of liver and put it down to a long gone "old fashioned" disease.
Injections don't seem so bad compared to raw liver every day
That’s what I would like to know. They also said thyroid wasn’t hereditary but I’ve got 4 generations with it. I knew when I was 16 I had a problem after watching my poor mum suffer for years. In and out of hospital for months on end for complete bed rest due to exhaustion and me being shipped off to relations. Eventually she had to op, far too late and was a nervous wreck.
unfortunately liver doesn’t contain nearly as much b12 as supplements and would be hard to digest for most with PA because of low stomach acid, it was a crude treatment. It would have worked through passive diffusion without intrinsic factor which is how oral supplements are postulated to work in PA, however more research is definitely needed. I find it most interesting that before pure b12 injections, patients were given injections of concentrated liver, which must have been unpleasant. I can’t imagine that wouldn’t have caused irritation, but I think anything is preferable to having to eat platefuls of raw liver!
Yes it is awful seeing your mum suffer so much. Poor lady. They just do not listen to us. We know our bodies better than anyone. Good for you having a rant at your GP. I am pleased for you. Good Luck.
Hello Survivorette. I did research and found the above. You are right, many haematologists do not know about the intrinsic factor and many doctors etc are not well informed. I was told that I did not need injections as my B12 was high, but I still had all the symptoms, so blood tests do not always give a true answer.
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