Why don't the symptoms of Pernicious Anaemia go away completely when treated? Martyn Hooper says many members of PASOC experience chronic symptoms. Why don't these symptoms resolve once B12 and folate (perhaps iron too) are taken regularly? Hasn't that fixed the deficiency?
If the damaged blood cells get replaced every 120 days, wouldn't they be back to full strength after a few months? Same goes for other affected parts of the body.
What am I misunderstanding?
Sometimes the damage is done and total repair isn't possible it seems. Especially neurological symptoms. Repair continues I'm sure but at different paces. An ongoing conditions like PA or diabetes needs the treatment and management on an individual basis. It's not like an infection that goes away completely after perhaps a course of antibiotics.
Also when one thing goes wrong internally it can cause other problems. Not always. If caught early good treatment should get you well .
I'm only 7 months in. I realise I'm very exercise intolerant now. I've never been a sports person or runner but a bike was my transport for many years and I used to swim and walk alot. I was told when I first joined this forum it's not a quick fix . I'm also shocked at seemingly 3 steps forward and 2 back.
I think the younger you are and the quicker treatment starts may give a better chance of getting back to functioning at an acceptable level. Im stuck indoors again as went to the Gp yesterday! ! As as they don't seem to know what to do with me thinking of other options.
I hope you pick up soon and find a regime that gets you well. TC
Hi can I ask what you mean by excercise intolerant?
I used before ill be very active. Never went to the gym number chucked to town and cycled home after walking around for 2 hours. I went swimiming. Ect. Since b12 defiency I've not been able to ride a bike. I've been to town 3 x in 8 months to the optichange and shocked how weary on trying to walk from taxi. I've been walking round the block 1/2 mile as a circle so feel safer to get back although a couple of times I've had to sit on a wall as legs gone or going into stagger walk. Last time I went further within 30 mins of getting home I started an 8 hour headache then migrain. Seems my body is intolerant to exercise. Can't deal with it . Awful. I love being independent and out and about. I used to pop on a train to London and walk about all day and see people. Basically no stamina at all or reliability my legs will get me home. A weakness in this condition that I thought would've improved by now. If I push it doesn't work if I rest no improvement either
That's pretty bad sounding. When I found out I was b12d I had just started excercise, fueled by the adrenaline of a family bereavement. It was going pretty well until I started self I jecti g then I went through a few weeks feeling as ill as I've ever felt. I'm now feeling a lot better, but still not 100%,but just can't get I to excercise again due to fatigue and muscle pain (particularly my power back).
Yes bereavement is helped by exercise. I swam after my dad's sudden death. I can't swim well so all my concentration was on keeping g above water lol so stopped me thinking. Perhaps the stress and adrenaline depleted your low b12 so you have a low starting point for recovery. I had a particularly stressful weekend before I fell. Daughter in a+ e mother collapsed. And 18m cat just died in her sleep?? All in 28hrs. First b13 blood test I'd ever had 106 serum. So like you started from stress related and probably exhaustion and body just said no more. So I hope ad you young I assume you can pick up quicker. But do pace . Be kind to yourself . I wish you well. P.s I got worse after first loading doses in November 2018. The injections really made the most improvement when reinstated in Jan 2019
Hi Nackapan. Just a thought...I read somewhere that some long COVID patients of differing aged are benefitting having micro increment exercise regimes...? Should we consider that alongside a medical response....? I dunno..?
Yes, the red blood cells go back to normal within a few months. That's why iron-deficiency anaemia can be totally fixed.
But the macrocytic anaemia you can get with a B12 deficiency isn't the only harm that is done. The deficiency also causes damage to nerve cells, and that damage can be extremely long lasting, or permanent.
Corrections. I cycled to towin
Opticians
I think Scotlad you can work out the rest....hope so
fbirder Is there a standard recommended regime for Pernicious Anaemia?
How much folic acid is a typical starting dose for recovery?
I presume B12 shots are given at 1mg dose a day and then less over the following weeks.
The standard recommendation in the UK depends on whether you have neurological symptoms.
If you do not then they recommend six 1000 mcg injections over two weeks, followed by maintenance doses of 1000 mcg every 8 to 12 weeks.
If you do then they recommend injections of 1000 mcg every other day until there is no further improvement in symptoms. Then maintenance doses of 1000 mcg every 8 weeks.
My recommendation would be the same for the loading doses. For maintenance doses I would recommend injecting 1000 mcg often enough to keep symptoms at bay. For some people that might be twice a year. For others twice a week.
Treatment of a folate deficiency depends on the severity. For most people taking 400 mcg a day of folic acid should be enough. Folate levels can change rapidly with a change in the amount of folate being consumed. People with a severe deficiency will be prescribed 5000 mcg tablets to take for a short while.
There is no need to take extra folate when injecting B12.
The chronic portion is due to the broken B12 recycling mechanism in the hepatic loop where evolution in mammals, at least, has found a mechanism to store B12. Oral supplements only work if the mechanism is working. Also since B12 is water soluble, the body can’t store it in fat.
The loop comprises the stomach (parietal cells), which produce the acid to release B12 and the intrinsic factor to capture and protect it in the gut. The next is the duodenum where the bile, which contains the excess B12 filtered out by the liver and the intrinsic factor get together again on the second, third, etc trip through the gut.
The gut (small intestine only) is the long piping that acts as the storage while the B12 is protected by IF. The ileum is the last portion of the small intestine where there are special cells for IF and where the B12 is extracted from “storage”. The portal vein brings all nutrients from the gut, including the B12 from the ilium, up to the liver. The liver mixes portal vein blood with blood from the heart and and filters out the toxins and most of the B12 to provide a small but continuous trickle of B12 in the blood to the body. The excess B12 is dumped into the bile for another trip back to the duodenum where more IF from the stomach hopefully awaits.
The B12 in the blood then has to cross the cell membranes to get into the cell where it becomes the catalyst between the methionine and folate loops. It processes homocysteine into methionine that eventually becomes the methyl molecule donator to the methylation of DNA which produces amino acids, etc for the cells to function.
The nerve damage arises from molecules like homocysteine building up when B12 is not present. The erosion of the myelin sheath on the nerve causes weaker signals . Once the nerve damage gets to the axon the nerve is gone. Myelin sheath repair is slow and competes with homocysteine, etc doing the maintenance of nerve membrane.
Anyway I'm not medically trained but that is my simple understanding. Any step in the process going bad starts a downward spiral that leads to B12D and eventually nerve damage, Neurological and psychological symptoms.
Stress and worry seems to be big triggers for starting into the downward spiral. Some think PTSD, chronic depression, nerve pain, etc are all related but more research is needed. One thing I would like to see is B12 testing being added to routine blood tests. The labs measure the level of macro cysts but not an underlying contributor. Having routine B12 testing on every one would build up a database that researchers could use to improve diagnose sooner to prevent the nerve damage. We have finger clip electronics to detect oxygen, sugar in the blood for diabetes, I’m wondering if something similar could be developed for daily individual readings of B12 in the blood stream.
Gut issues get worse with old age and I’m telling all my relatives and coworkers to get their B12 tested and take supplements till they are sick of hearing it.
I’ve developed gluten and dairy intolerance in my gut since my B12D was diagnosed but the nagging question is what came first.
I had stomach a surgery procedure called a partial vagotomy as a treatment for a duodenal ulcer. I was also diagnosed and treated for heliobacter-pylori at the same time. It was wonderful then to be rid of the stomach pain but no one thought to mention or prescribe B12 supplements that I would need 17 years later to stop the downward spiral.
Now I’m on weekly B12 injections and supporting supplements to maintain, and very slowly improve, from the nerve damage.
This was the “cancer” equivalent disease in the late 1800s and back then, it meant a death sentence.
After WW2 and the government mandate that bread flour be enriched, they then thought that the disease was cured for the general public at large. It was not and it was forgotten and today it is totally misdiagnosed until the nerve damage has occurred. That’s it for my rant.
Brilliant, thank you: simple enough for my B12d brain to understand but thorough and informative.
I think that by the time we get symptoms, a diagnosis and treatment so much damage has been done throughout the body that it can't all be repaired fully. Usually something has gone wrong in the first place to cause the deficiency so obviously unless that's fixable the problem is being perpetually caused.
I get the impression that even in the cases of vegans, who were healthy before they became deficient, if they get to the point of symptoms too much damage has been done.
Now I might be getting things wrong - someone please correct me - but cells renew by replication and the old cell divides its DNA to make a new one. New cells aren't made from an original blue print each time - unfortunately! Over time the DNA for each cell might not quite get copied exactly, leading to defects and hence aging (and cancer).
As B12 is required for DNA synthesis a deficiency of it may lead to more corruption of the code in the replication process, leading to more cells with problems. I can't remember properly (!) but I've got a vague recollection that there are mechanisms to get rid of the faulty cells so that repair can happen so we do get better but if the damage has gone on for too long (enough to cause symptoms) there are just too many damaged cells and not enough perfect cells replicating for a full recovery.
"...I've got a vague recollection that there are mechanisms to get rid of the faulty cells so that repair can happen so we do get better..."
You're probably talking about autophagy. Intermittent fasting will help encourage that.
Have a read here: draxe.com/benefits-of-autop...
Thank you!
Ok this is right along the line of what I'm wrestling with.....my white count has been low for about 10 months and to be honest without much support for my idiopathic "b12 problem " diagnosed in 1995, I had slacked off on sublingual methyl b12. I was diagnosed with breast cancer. And had a double Mx. No lymph nodes affected, stage 1, grade 1, no chemo no rads. But now they're saying I need a bone marrow test to rule out a clonal issue or myelodysplastic disease of my marrow.
I've started injecting about 3 weeks ago about twice a week, and I wonder if my very borderline low white count could go back up and reduce the need for the biopsy.
Anybody had this issue? If it was caused by my b12 "problem" I'm gonna be so pissed off that no doctor really ever took stock in it. I left the GP who diagnosed me, but even she just said, "just keep supplementing." When I would get serum results with sublingual tabs of 1200, I figured that was overdoing it. So I didn't really stay regular.
Ashley
That's fascinating... I had a perforated duodenal ulcer at 16 years old. No idea how the surgery affected me, or the detail you know about itikr partial vagotomy, and treatment for h pylori bactor . I never got any b12 and now at 42 I have Autoimmune pernicious anaemia and self inject twice a week, with no cofactors, on the advice of Dr ******. I've lived with anxiety, mood swings, lack of focus, chronic indecision making, Insomnia, gut dysbiosis, also had a bout of Encephalitis with no known cause at 20-21 years old coincidentally after h pylori bactor treatment (maybe unrelated but it makes you think eh?)
It’s amazing isn’t It? My doctor wanted me to take statins because my cholesterol was raised on my health test at 70 yet I’ve had no end of trouble getting my doctor to take my b12 d seriously. My experience is that the doctors will follow the symptoms to any conclusion - mental, physical anywhere but b12d. I see lots people my age with very clear b12d symptoms but no amount of telling them gets through. “My doctor said .....” is their defence.
If statins can be dolled out like sweets when one can alter ones life style to correct cholesterol levels why is b12 supplementation not recommended as a matter of course?
There isn't a drug company pushing a drug or educating doctors about B12D. The role of drug companies in doctor education is underrated.
you got it. no money in b12. and it might even affect the sales of profitable drugs. why would you educate doctors about it?
I agree with you completely on the B12 testing. I am sure so many things could be prevented by adding a routine B12 test to all of the others. It should be standard for anyone taking metformin and/or a PPI given what is now known about the actions of these two drugs. I also tell everybody about b12 and advise them to get tested.
Fascinating explanation thankyou for that. 😁
I often see people getting 1 b12 injection every 3 months and I wonder if they had more closer together if they would heal more. How can anyone heal PA with 1 shot every 3 months?
You can’t ‘heal’ PA; all you can do is stop the damage from inadequate B12 levels, and the day-to-day symptoms from this, by ensuring the body contains enough, usable, B12 at all times.
This depends on how much the body takes in, how much the body turns into the non-useful form, and how much the body excretes; a three-monthly injection, for someone with poor, but not non-existent, uptake from what they eat, may keep the B12 at a sufficient level between injections, and having more B12 more frequently won’t do any more good. (It won’t do any harm either, as excess is just excreted, but it has no clinical benefit).
However, a person with practically no dietary uptake, and/or a high level of B12 excretion or neutralisation, will need those monthly injections to maintain their levels.
It’s kind of like your petrol tank; you don’t want it to get empty, and how often you fill it depends on how much you ‘drive’ (use it up); but having it fuller than ‘full’ is no benefit.
I have been dealing with B12 deficiency for less than 3 months now. It’s surprising how little doctors are aware of this condition and it’s side effects. Most of my knowledge base has come from this forum. I do agree that it seems like each individual needs to find a regiment that works for them. I found out recently that if I don’t at least have my shots once a week my symptoms will return. In my opinion I think twice a week would be better but I’m still learning. I am also still in the early stages of finding out if normal everyday physical exertion aggravates my symptoms as with every bout of returning symptoms appears to have followed some physical activity: light floor core stretching, cleaning my tub & installing a light weight shelf. If I remain with my normal daily routine with little to no activity and weekly B12 injections I seem relatively back to normal. I do still have to wear an ice pack on my lower back as that area seems to always bother me. Hopefully I will see improvement through the continual B12 treatments but for now this seems like the norm.
symptoms with treated PA
PA, can it just go away ?
Why symptoms return when blood levels are still high?
Suspected Pa , symptoms question
Self treatment for PA symptoms, is it possible?
