Does anyone know why Pernicious Anemia lost its seemingly original title of Biermer's Disease?From a marketing and branding POV, it would seem to make alot more sense to use this to describe the condition. Then we could use the term 'Anemia' to describe anemia.
But also i think a rebrand to 'disease' could get medics to take it more seriously...
Just a thought
If the word PERNICIOUS , meaning DESTRUCTIVE, LEADING TO A FATAL OUTCOME, does not interest and alert the medical profession , I honestly don’t think that the term “Biermer’s Disease “. would change their degree of interest one iota
But its great that you have thought about it.. Yes we would like this pernicious condition to be properly researched and treated by the medical powers that be . There’s no money in it for “Big Pharma” .
. Our Chairman Martyn Hooper MBE , is fighting on our behalf , and we salute him .
I suppose Im reflecting on an interaction with a leading neurologist in Central London who said to me.
'Your descriptions are quite dramatic. You weren't going to die'
And that assumption of theirs, that I wouldn't die but would need specific treatment to survive, made me wonder if reverting back to Biermers disease or Addison-Biermers disease may help to distinguish PA as a lifelong threat as opposed to a B12 deficiency of unknown character that could be resolved eith treatment.
(although I read that Addisons disease is also a separate disease relating to the adrenal glands)
Perhaps there is no easy way through. Would happily join or encourage any brainstorming or blue sky thinking to consider a rebrand of the name.
I collapsed and was rushed into hospital by a paramedic. I sat in the emergency department with a trainee doctor sitting closely and holding my hand so she could feel my pulse while my blood was being analysed. Her eyes told me how very worried she was. They whacked in an IV drip with B12 very fast and took me off to a ward where I was hooked up to a heart monitor that beeped now and again resulting in staff rushing up to make sure I was OK.
The next morning the consultant made his round with a group of students and explained that pernicious means deadly and that they had caught me just in time as another hour and I would have died. That LEADING neurologist was wrong and should be sacked.
Whats needed is a better understanding of PA and better training of medics rather than a different name.
Yes.
What is needed is a better understanding of, and respect for, the range and severity of the life-changing symptoms of B12 deficiency.
(Whether PA, Biermer's, Addison-Biermer's, yet-to-be-discerned PA, certainly not PA at all, mistakenly attributed to something else, undiagnosed for years or functional B12 deficiency.)
I suppose my way of thinking is very holistic. And since the symptoms can be similar between PA, megaloblastic anemia, dietary B12, Nitrous Oxide, alcohol etc, id be curious to see if there's a spreadsheet checklist.
But wait. A simple Excel spreadsheet of all the anemias, causes, symptoms, treatments is just too much to ask of the medical world, isnt it? 😀
They don't seem to ask the initial questions to determine differences (if any) early on - before generic treatment.
Is this why NICE suggest a urgent call with a hematologist and, if not, crack on with injections?
Id be interested to know how many hematologists actually received training and have knowledge on each form of anemia. In many ways it makes sense for them to be the first port of call but do they know all the differences?
I don't think they do.
Thank you for sharing that. It helps to understand the scale of things. Thank goodness you ended up in a good hospital.
So I had a question - do you think its possible that Megaloblastic anemia, not causes by PA but dietary or gastro (celiac, SIBO etc) would have the same urgency? Im guessing not.
That leading neurologist is going nowhere Im afraid. Its impossible to fire the boss, isn't it?
At least prompt treatment .Hope students got that bit
Definitely more research and training
When I collapsed nothing much done.
Then as I got worse was driven to A snd E as the ambulance service decided they weren't coming after 4 hours.
Then A + E put me on a heart monitor.
Had a brain CT .
Then told I'd had a panic attack probably due to the recreational drugs they thought I'd taken.
Dilated pupils and unable to walk.
B12 deficiency only discovered at a later date.
I thought it was some kind of stroke at the time of the 111 call that then ordered the ambulance..
That never came.
All rather surreal now.
Scary in a different way to you.
I think Pernicious clear enough.
Anaemia confuses ( not all get it)
That's if you get a diagnosis of PA .
My daughtef had a b12 level of 81( 200-900)
Megabolistic anaemia
Iron anaemia
Low ferritin 9
Low folate
Still no PA diagnosis on her notes .
Verbally told it was after an endoscopy .
Was told once sorry they'd missed it . G.p
Still has to fight to keep 10 weekly b12 Injections given on time.
Until accutate tests or clinical judgement recording finds.
b12 deficiency from whatever cause has devastating symptoms as we all know.
Needs to be stated snd clearly understood to treat at thd earliest opportunity.
A + E don't test for it in the UK .
I wrote for their education.
'My short story ' in a and e .
Made it clear not a complaint.
No energy for process.
Reply
Is not in their remit.
I wrote back .
Send to Gp for urgent blood test
Also it shoukd be in their remit.
Not bring believed about not taking drugs hit me later .
Pernicious b12 deplete / deficiency perhaps
Dietary causes can be rectified after treatment.
Other causes need life long b12 injections .
This still is not universally accepted and certainly not written down I gp's guidelines.
Although prescribed b12
It has use as directed on the packet.
Recently I saw am entry from last nurse. 'Apparently' agreed by some g.ps !
Seems to have her own regime???
Previously stated
Gets anxious if csnt access b12 so regime continued as otherwise affects mental state.
By a nurse practitioner as a reason to reinstate my prescription.
Mental health labels powerful I justifying it it seems.
Not a box to tick to say .
Medically needs more thsn 2-3 monthly.
As usually refer to blood test results.
Nurses question every time if new.
I can't be right needing so much !
Back to Gp.
Hoping for new NICE guidelines include ALL
Is that true that A + E don't test for it in the UK?
Didn't with me. And my GP didn't either. It wasn't until I changed GP's that I got my first B12 test. It was 367 so GP said that I couldn't have B12D despite me telling him I had been taking 2000 mcg a day for over 2 months.
So you could absorb b12 from a tablet but not use it ?
I was using it. But it was such a slow process. When I switched to drinking to B12 I got better much quicker.
It's a slow process on injections too .Good you were able to absorb it and use it .
My sister managed without injections but needs s high daily oral dose.
Her deficiency was dietary.
I scared the life out of her.
She 'twigged 'what was happening to her .
Caught in the nick of time .
Timing
Post menopause changes how much you can absorb from food I believe strongly.
Hormones!-
I'm glad that you've recovered and that you were in hospital.
My mother's GP - after years of having B12 injections - told her that she needed no more B12 injections as her blood result was fine!
Unfortunately, due to GPs advice my mother developed stomach cancer and died several months later.
I had never heard PA refered to as Biermers Disease so i searched the net. I found a couple of old references to Biermers but nothing that stated as to why the name changed !
Maybe CliveAlive will enlighten us, he has suffered with it for 50yrs or more. Perhaps we should go to our Drs and say we think we have biermers disease, that would really confuss them. 🤔
scirp.org/journal/paperinfo...
According to Wikipedia, a German , Dr. Biermer , first discussed the condition in 1872 , and he himself named it “ Pernicious Anaemia. “ .
Interesting discussion.
It's a bit like Hughes syndrome which was named after the founder but now called Antiphospholipid syndrome, Hughes being much easier to pronounce.
I totally agree with the no money in it for 'Big Pharma' hence the lack with regard treatment. I too salute Martyn Hooper who has battled so hard on our behalf.
clivealive
Just wondered if you had any thoughts on this?
Sadly I only go as far back as having a diet of raw liver suggested as a"cure" for P.A but I do know that it was only about 30 years previously that cobamalin was synthesised into an injectable sourse od B12
From my recollections, Thomas Addison [British] described the condition a few years earlier, and Biermer [German] gave a more detailed description in ??1860. Eventually, William Bosworth Castle [American] discovered Intrinsic Factor and his name became associated with the condition too.
If you want confusion, look up the 'discoverer of Oxygen', and compare Priestley [British], Lavoisier [French] and Scheele [Swedish] and make your own mind up. Of course, being British, I support Joseph Priestley's claim!
Trust you FlipperTD,.
As if I weren't confused enough you threw another spanner in to totally bamboozle this fuzzy old head of mine. 🤔 🔧
I'm off to look up Joseph Priestly.
Priestley was initially a supporter of the Phlogiston Theory.
My work here is done... [for now!]
Found a reference to
"Addison-Biermer's disease"
I suggest that a look at this link might be of (passing) interest:
One of the problems with Addison is that he was involved in many things. So we have Addison's Disease - originally TB destruction of the adrenal glands. And Addison's Anaemia - which is a synonym for PA. Which causes confusion even to this day.
There are something like 17 different anaemias! Sickle cell. Anaemia of chronic disease. Iron-deficiency anaemia. Aplastic anaemia. And that's just a start. 
Very interesting.
With the anemias, for example there is also Megaloblastic anemia, which is a form of macrocytic anemia. But I suppose this doesn't have to be present for Pernicious Anemia to be present.
So I guess that Pernicious Anemia is effective in differentiating PA from other temporary anemias. It just seems to lack the clarity that it is an autoimmune disease.
On reflection, then, perhaps its more a matter of properly educating GPs on these 17 anemias.
Boggles the mind that they don't seem to know about these things!
Not only does megaloblastic anaemia not have to be present, it might not occur at all if the person has concurrent iron deficiency (for example) and PA. The enlargement caused by low B12 sort-of cancels out the microcytic effects of low iron.
That is where the RDW (red cell distribution width) can help. A high RDW suggests some large and some small and points at this issue. Whereas a low RDW suggests all RBCs are within an acceptable window of size.
Thank you helvella for posting that link which states all the different types of anemia. I have learnt more on this site than what I have from any medic working within the NHS ! If we can learn about such conditions it makes me wonder as to why they are unable to do the same ? 🤔
P.s Answer's on a postcard welcome. 🤣 In all honesty when you look at how many are on this site it is no laughing matter.
I think Martyn Hooper mentions the term Biermer's Disease in his book
"What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency"
Or possibly on one of his previous books
Heart disease and Pernicious Anemia
What is the procedure to start B12 and to measure b12?
Confused about what should a be concern
symptoms of several autoimmun diseases, how to differ them……?
