I’m back again and another complaint about a professional’s lack of knowledge in PA. Today I had a consultation with a naturopath whom I have been seeing since July. She wanted to discuss my B12 injection regimen. In her professional opinion, she believes that as the gut healing process I’m currently undergoing progresses, with improved gut function, she recommends that I won’t require B12 injections for life. The body will be able to absorb B12 through the stomach again. My argument was that I have PA antibodies hence the PA diagnosis and treatment of B12 is for life. Her comments then were that those antibodies will be reversed and will not pose any significant health risk. I told her that it’s impossible to reverse what the immune system does otherwise medicine would have found cures for all autoimmune diseases. I have worked so hard to get my B12 levels to where they are that there’s NO way anyone will stop me from my B12 injections!!! Two medical professionals each in different fields, in the past two days trying to convince me to stop my B12 treatment, what are the chances of this??
Can someone on this forum post a link that I can support my arguments to her?? I am fully aware that naturopaths see all treatments that aren’t ‘natural remedies’ to cause harm somewhere in the body but, I never thought that B12 therapy wasn’t natural treatment as it is essential for the central nervous system to function properly and that methylcobalamin was a synthetic vitamin. Are Adenosylcobalamin, Hydroxocobalamin and cyanocobalamin also synthetic treatments?
I would sincerely appreciate clarification on this subject.
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GoneWithTheWind1972
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I read your Bio and understand you are from Australia and are well versed in dealing with medicial personnel.
One way to approach the issue is rather than try to show that PA is permanent ask what leads to her conclusion it is not.
>>In her professional opinion, she believes that as the gut healing process I’m currently undergoing progresses, with improved gut function, she recommends that I won’t require B12 injections for life. The body will be able to absorb B12 through the stomach again.
What data is this opinion based on? How is improved gut function showed to be improved.
If the standard of treatment in Australia is B12 for life then what is the rational for deviating from this standard?
The test for PA Intrinsic Factor currently used is said to be not sensitive and that is the cause of different test results. It is often stated that it is 40% to 50% false positive. Which means it is wrong as often as correct. So testing could not show that PA is resolved.
For me I self treat by symptoms and not a IF test.
Yes I’m in Australia. Why on earth would she possibly think that antibodies are reversible? She also commented that my medications for Crohn’s do more harm and creates a ‘leaky gut’ situation that could hinder my recovery. If in any way could she thinking she could cure me of these two autoimmune diseases why don’t all naturopathic practitioners share the evidence to support these claims???
I find dealing with anyone with some form of high medical degree, completely frustrating and negligent and require re-education so as to not cause disastrous consequences for all in the community. I am so very grateful that I have finally found my voice to be able to speak up for myself time and again and will continue to do so (behind my tears and shaky voice like I have in the last two days) and feel empowered to push through the obstacles standing in my way. I appreciate your feedback.
hello, I appreciate your frustration in dealing with these misinformed medical practitioners.
Your wish to educate them is admirable, bearing in mind that they may well be entrenched in their views.
However, you are ill and do not need the added stress this and of 'justifying' yourself. It is not your duty but their duty to be correctly informed.
An alternative way of dealing with this matter would be to politely suggest that you believe them to be misinformed; that their information is out of date; that you must agree to disagree on this particular matter.
Like you I have had to take care of my own body and health care to a large extent My best wishes x
You are completely right, they make me stress unnecessarily. For a while I thought that maybe I was too focused on my self and my healing that I try to live my life to the fullest and not obsess every day then, I need to see a doctor for minor things and encounter a GP who has to give me their expert opinion and create stress for me all over again, and the chances that happening two days in a row?? Thanks doc, you made me cry in the clinic. We really don’t need you reminding us what we live in our everyday lives, to me that’s not caring. I take a deep breath and carry on, again.
Trust yourself and your own experience and nobody else. Medics and naturopaths all have their own agendas as well as their lack of knowledge and understanding. You are on the right track.
I confess that I have not come across 'It is often stated that it is 40% to 50% false positive.' I'm more familiar with only around 50% of PA patients showing Positive IFAb results. [I've seen one study that quoted 'Positive results found in only 70% of cases'.] Intrinsic Factor Antibody testing is complex, given that the 'Antibody' isn't a single species. 'Blocking' versus 'Binding' for instance. Given that around half the patients we see with PA [well, we think they have PA!] don't have demonstrable IFAb could just be that they don't have demonstrable IFAb, pure and simple. Or the titre is so low it's below the threshold of detection. Serial testing over time [in my laboratory] did find that some patients had increasing titres, and some didn't. I have no published data on this.
In recent times, with Covid, we've seen that antibodies can come and go, although it's not the same thing at all, I admit. Stimulating the immune response by serial vaccinations does show an increase in antibody activity. In some circumstances, a broad spectrum increase in antibody activity can be seen too.
In PA this is definitely a case of 'if a treatment works, use it.' Thinking back to when we had Schilling tests, at least we were actually measuring absorption of B12 across the gut wall, but those days are gone.
It's a fascinating subject, and I suspect we're still only scratching the surface.
Hi FlipperTD, your scientific explanation makes complete sense and value the insight. Can you correct me if I’m wrong, if treating PA eventually resolves all the damage that was caused and maintenance B12 is only required , is it then possible for the immune system to become regulated and reduce the antibody production level to a modest amount?? Risk should not be taken to exclusively rely on the oral route out of fear of becoming deficient again hence, B12 injections should be for life. Just trying to confirm that antibodies fluctuate just as with an infection. Active B12 normal =lower PA antibodies, low active B12=higher PA antibodies??? My apologies if my explanation is not clear enough??
Thanks for your response and you've got me thinking now!
Firstly, treating PA eventually resolves the damage that was caused by the stomach's issues with producing IF. This can take a very long time, and sometimes it's not possible to resolve everything. Parenteral B12 should certainly resolve the megaloblastic anaemia, but that's only half of the problem. When someone is B12 deficient, then there are issues throughout the body. The intestinal mucosa is B12 deficient too, so it has difficulty in absorbing other nutrients too. This improves relatively quickly. The nervous system problems take much longer to mend, probably because the cells don't regenerate as quickly.
IF antibodies shouldn't be there in health. Likewise Parietal Cell antibodies, which are often found in PA. These aren't the same thing, and we can find either, both, or neither in patients unable to absorb B12 from their diet, and I confess that I don't have an answer to 'why?'
If you've found something that works for you, then do it. Trust yourself. Good luck.
Compare to celiacs. When they stop eating gluten their gluten-related antibodies decline slowly over months or sometimes years, but they are still celiacs, and as soon as they start eating gluten again their antibody levels rise. That's why suspected celiacs who have already started to avoid gluten are sometimes asked to do a gluten challenge, i.e. eat a certain amount of gluten daily for weeks, in order to diagnose them by measuring antibodies and/or checking for intestinal damage during an endoscopy.
Antibodies against intrinsic factor don't depend on anything external though but are formed against something the body produces, the intrinsic factor. Why should those antibodies decline when the gut heals?
The only way she could have a point is if you don't have PA and the only reason you absorb less b12 is because of an inflamed intestine due to Crohn's. If so, perhaps you could start absorbing b12 normally if the inflammation goes away, never returns, and has left no permanent damage.
But why risk it, and how could she be 100 % sure? It is far riskier to stop the injections in case you may absorb it orally, than to continue in case you don't. B12 happens to be very safe and also quite inexpensive, so better safe than sorry means keep taking it.
Great example, celiac disease, and so true! I wasn’t aware that those antibodies behave this way. Your explanation is excellent. You have given me some insight into this condition, thank you.
I know that I need to inject B12 or I suffer and that is what rules my choices.
I allow that it is possible that the antibodies that affect Intrinsic Factor may not be permanent and if they are not it would not be known as no one has studied it. I would also allow that they are intermittent and if they were it would not be known.
The body produces them for unknown reasons. The testing for the antibodies is inadequate to reach any conclusions.
I allow that it is possible that the symptoms of B12 deficiency can be eliminated and injecting B12 is not needed. That this has been shown to be the case is to date unproven and not studied.
I would not take advice from a medicial doctor regarding stress or any mental health conditions as they are licenced but not qualified or competent.
Stress is not the same for everyone yet everyone seems to believe it is. Often advice for dealing with stress is not dissimilar to praying. If it does not work you are not doing it right.
I would listen to anyone who has a cure. I would easily reject current understanding as it is so flawed.
I know that I need to inject B12 or I suffer and that is what rules my choices.
Thank you Wizard6787 for this reply. I agree with you 100%. No doctor will EVER stop my treatment of B12. I have learned this the hard way unfortunately when I innocently followed the protocol for B12 treatment in the beginning of my PA journey. This protocol was insufficient for me. When I questioned doctors if it was possible that I may require more frequent B12 treatment they shut me down, called it fibromyalgia and gave me antidepressants. My body pain was actually neuropathy and was caused by insufficient B12 treatment. I will never, ever allow myself to be subjected to medical gaslighting ever again. I also know that I require B12 treatment or else I will suffer, it’s my choice and my right. Power back to me.
My relationship with medical personnel is adversarial at best and meets the criteria of abusive.
I am much more confident/comfortable now I am definitively winning.
In the USA being ahead of the curve with knowledge was easy.
I personally do not engage is trying to train physicians. It is a noble cause to be sure. Thing is for me training when the best outcome is 1mg EOD is creates no passion for me. Pretty much if they will not follow a simple flow chart I cannot get up for the effort in trying to convince them they should.
I think this is a burden of proof confusion. She needs to provides some evidence that PA antibodies can be reversed as current medical understanding is that they cannot. A study posted by JillyMo a little while back contained interesting research on a treatment to "reset" antibodies (unrelated to PA). It would be interesting to see this explored further in the context of PA. But I'm not aware of any documented cases of confirmed PA being reversed.
Bear in mind that (most) Naturopaths do not practice evidence-based medicine so I would not take what she says as a "professional" opinion. B12 is a sufficiently specialized topic that only someone with significant exposure to the diagnosis and treatment of it, is likely to have an informed opinion.
This often does not include medical professionals but of course some may be very knowledgeable. You just can't count on it and I would not regard their opinion as carrying any more weight than the average layperson. Even registered dietitians can have a poor understanding of the topic, although I would consider their opinions as being more "professional" in this area, but even than, I have heard uninformed opinions from them too.
If you have time to read the pinned post "Various B12D/PA resources" and understand the contents, you will already know more about B12 deficiency and PA than most medical professionals.
Hi Technoid, thank you for your feedback. This makes complete sense. I sometimes wonder how doctors become doctors and lack certain qualifications, they are dealing with people’s lives. I definitely believe that I’m more qualified and knowledgeable than this person about PA and will never stop my PA treatment for life.
Hi Sleepybunny, I am a member of the PAS and will be returning there to have that article for future reference, thanks. Maybe have one sent to the GP and one to the naturopath.
"B12 is a sufficiently specialized topic that only someone with significant exposure to the diagnosis and treatment of it, is likely to have an informed opinion."
Added to this is the reason why it is so: No high quality research has been conducted to determine, regarding people with B12 deficiency with neurological symptoms, what is the optimal frequency of B12 injections, and what is the optimal size of dose. It appears that any information at all on frequency of dose and size of dose has come from clinicians who regularly treat people with B12 deficiency, and have noticed anecdotally under what conditions patients seem to do better, leading to the widely shared (among clinicians with such experience) opinion that people with B12 deficiency with neurological symptoms do better with frequent injections, with "frequent" meaning no less than once per week. That is why articles, that otherwise meticulously cite sources of assertions, in support of frequent injections when treating B12 deficiency with neurological symptoms, cite sources other than primary research, such as a brochure that is packed with cobalamin, or NICE guidelines.
This is my understanding; I welcome any correction.
Would agree. I have never come across the logic (if any exists) for typical B12 injection frequencies. If anyone has ever come across something like it I would also be happy to learn. I have some standard medical textbooks that cover B12 deficiency and treatment and academic books on B12 deficiency and treatment. None that I've yet encountered explain the reasons behind the typical treatment schedules so their origin remains a mystery to me - could be an interesting research project if I had a bit more time!
Because antibodies can wax and wane many practicioners wrongly assume the condition has gone ! I have a diagnosis of antiphospholipid syndrome (sticky clotting blood). My ignorant rheumatologist informed me I didn't need my blood thinning medication anymore ! He went to tell me my antibodies had gone because they hadn't shown on the blood results ! Had I have stopped my meds I might not be here to tell the tale. ⚰
My heamatologist was furious at his theory and suggestion.
If our Gps / Consultants do not fully understand our conditions then they shouldn't be treating us. It's a constant battle that we shouldn't have to endure. 🤬 PA needs to be treated for LIFE.
There is no excuse these days for incompetance where our treatment is concerned when there is so much information available.
Hi Jilymo. Thanks for the feedback. I thought this was most likely the situation. Antibodies will wax/wane but not necessarily disappear and should never assume that PA has been reversed hence PA treatment is for life treatment.
Hello Gone With the Wind,I am seeing a naturopath to heal my gut. I also have PA. I admit that I am a believer in miracles and the power of our minds to heal. I will not stop taking my daily B12 shot, because like you, it's taken years to (mostly) recover from debilitating neurological symptoms.
However, I AM willing to take another intrinsic factor blocking antibodies test when I complete the naturopathic treatments to see if my gut biome has convinced my immune system to stop attacking my parietal cells.
Let's stay in touch. I am eager to hear more about your journey.
Thank you for your interest and reply. I generally am an optimist in regards to my health. My theory was, I need to return to the person I once was prior to my PA diagnosis. Whole, clean food was strictly back on the agenda and anything inflammatory was to be avoided/ removed and was open to another side of healing. Hence, a naturopath was an ideal solution. Upon the early stages of healing, already having preconceptions about what a naturopath’s philosophy might consist of (and being on meds like immunosuppressants) I insisted if she would want me to come off any of my current medications, I would not commit to the prescribed healing process. My meds would stay put and she would have to work around them and she agreed but five months later she would bring up the subject once again. My quick response was to shut that discussion down and just focus on the gut healing process. Too much work has gone into this that I am not willing to alter in any way so, work with the canvas prescribed to you. Every so often rage will flare up when extreme pressure is applied to me to change. I cannot continue with one step forward and two steps backward at every time a doctor/naturopath see my pathology results. In the end it’s work with me not against.
Thank you for sharing your story. It's awful to have to educate doctors on PA treatment and so much more. I totally agree. Work with me, not against me.
I concur with Technoid and Scotlad76 here. Naturopaths are not medically trained and engage in some highly dubious approaches. Check out Britt Hermes on line to find out more.I can see why people are drawn to them, when it's so hard to get the right diagnosis from traditional medics, but naturopaths are misguided at best and often down right dangerous.
You seem to know whats right for you now, so don't be afraid to stick to that.
Hello Gone with the wind and I fully understand, I am in Australia too in Brisbane and I had given my Dr all the info from PAS and she was great at helping me as I have 5 Autoimmune diseases and she was glad I advocated for myself and was grateful for any information I gave her, well problem now she has left the practice and I have a new male Dr and he had me do blood tests after I had just had a B12 Injection, I told the lady taking the blood and she said she will mention that with the test. Well the results came back and he asled to see me and told me my B12 is too high and I will have to stop for 6 months at least. I tried to explain but gave up in the end. I have printed out all the info again and will take to him but the thought of getting into an argument with him makes me not even want to go. It so dam hard and I am just so glad I have found PAS and the B12 group as they have all helped me cope. It gets quite depressing, but I refuse to give in or give up, just sick of the battle. I wish you luck too.
Hello KTWO29, I can only imagine how hard it would be to deal with five autoimmune diseases , I have two and that’s hard enough for me. I too am sick of the constant battle with doctors on this issue. Some may be open to patients providing medical updates to them and mostly are not. We have to persist for our rights otherwise who will?? Many on this forum share similar sentiments, we gain strength here to be able to confront many ignorant doctors who hinder our healing rather than support it. A big hug to you.🤗🤗
Hi KYW029 My practice did the same thing declined my repeat b12 viral & said my recent B12 was high and was adjusting frequency sure they wanted a 6 month lasp.. I sent another request for my b12 and wrote please view NHS guidelines, I have PA with intrinsic antibodies injections are for life, I still have fatigue, pins& needles headaches tinnitus, it is not possible to overdose on this. I need my b12 and you can’t just stop this without speaking with me, it is expected to have high reading when on these meds, and NHS states it is not necessary to request b12 blood readings …. The next day I received a prescription had my injection yesterday, noticed a note saying review but, I am not having it I was soo poorly 5 years ago not allowing anyone to take me back to that space… Hope you get yours reinstated asap,
Natural sounds kinda of good and healthy and contrasts with unnatural or synthetic as kinda of bad and toxic.
However in reality natural isn't a reliable proxy for good. Examples: HIV, ricin and rickets are all perfectly natural. Conversely hydroxocobalamin might not be described as natural but is pretty essential for my well being.
So what is good for well being is good - whether it is "natural" or not.
Hi Cornwaller, I totally agree with you!! If any form of B12 be called synthetic, then so be it. Synthetic or not it has saved my life and more people’s lives since cobalamin was discovered as a cure for PA more than a century ago. It will be used by me for life no matter what a naturopath thinks.
Please allow me to make a minor point: Humans have not learned to synthesize B12. All B12 is produced by bacteria, commonly in the gut of some animals. Sometimes B12 is produced in laboratories, but in the labs it is produced by bacteria, and is not synthesized.
Fabulous and RELEVANT advice above. I think most of us have learned the hard way that we can seldom rely on medical or healthcare professional opinions when it comes to autoimmune diseases like PA.
My game plan is to stabilise my condition to get my body to function again - for me this is as much B12 as MY BODY calls for and I supplement with co-factors. I have had positive results and am still following this body-led approach.
At the same time I look for ways to repair “leaky gut” with experimentation in diet and pre and probiotic foods. I have been successful with this too but I found MY solution only 10 weeks or so ago after lots of trial and error. I am still in the repair stages I believe but I have nothing to go on other than the contented gurgling my gut makes now when I feed it compared to excruciating pain and bloating before.
The next stage in my plan is that in the New Year I am going to continue the above as well as start to explore the causes of my PA as my brain and body are now functioning again. This is more to guide my children as I believe they may have PA too as their B12 tested low but not dangerously so. They are responding to oral B12 so maybe at early stages some gut absorption is possible - I don’t know.
I am aware that it seldom stops at a single autoimmune disease so I want to prepare and strengthen my body to resist further attacks.
This forum has been invaluable in my health journey. I strongly believe that without the support and knowledge of you all I would not be here today. I am more than willing to support others on their health journey best I can.
Hi Wwwdot, my sentiments exactly!!! I too have been having gut improvements via naturopathic means and value the knowledge provided. Gut healing is a long term investment and not a quick fix with ‘take this, then this and then you should be right’ approach. I would like my whole body to function better so I may be around for my children. At least, if my children may develop PA (my mother has PA) they will have all this collection of knowledge at their disposal to prevent any long term permanent damage to their bodies. I too would be lost in the system if not for this forum. Best of luck to you with gut healing, hugs to you too.😊🤗
Maybe you can look at the positive this naturopath has said, from what I have read that your stomach health has improved in leaps and bounds, even if you don’t believe they haven’t given any negative energy, I personally would love to believe one day when I have my stomach health top priority these autoimmune illnesses I have will have dissolved .. because for most of my life I didn’t have it soo why not hope, the body does have amazing healing properties, people have self cured cancer, removed rumours.. Anything is possible I may never be able to stop having B12 injections as you I have positive instrinsinc antibodies, but I would rather not have synthetic substance injected into my body if I can, soo while I am in need I will ..
So stand your ground with what you believe, as you said you have worked hard to be in the place you are now , maybe they where trying to encourage positive thinking and continuity’s with your progress
Well said Elf! You are absolutely right that there are positives in the views expressed by the medics et al. It is the positive beliefs that we can heal that we need to embrace whilst at the same time going with our instincts as to what our bodies need now to avoid any permanent harm.
I do believe that anything is possible and frankly there is more we don't know that what we know so who's to say "can't" or "never".
My current personal view on the question of can PA be reversed.
It is possible that PA can be reversed as that is unknown and not of interest to those that research or are involved in the treatment of PA.
There is a reason that the body produces antibodies. The cause is unknown and not being studied. Nor is it likely that the methodology of the research will lead to that discovery.
The shilling test might be able to lead to the discovery that PA is reversible. Current testing is inadequate.
The shilling test was abandoned as it was inconvenient under the guise of the isotopes were dangerous without scientific understanding of the danger nor any reasonable consideration given to the risk to the patient vs benefit.
The shilling test although far superior to current testing is not as profitable for the physician. The current testing meets the needs of the physician and that is the controlling interest. Scapegoating the insurance companies is not legitimate.
The Issue of is PA reversible is solved and the protocol is sufficient to all parties other than the patient diagnosed/un-diagnosed/miss-diagnosed.
In summary the question is unanswered and is of no importance to anyone but the patient. I see no impetus to effect any change.
With enough IM B12 injections, the titer amount of parietal cells antibodies will decrease and can become undetectable. Note study linked to those with burning mouth syndrome and or lichen planus. However the "connection" is the parietal cell antibodies being decreased, hence both conditions AIG (less antibodies less stomach inflammation) and oral issues also improve. You cannot reverse the PCAB , but perhaps she is speaking to putting them in remission.. Remission does not mean cure and you still require an adequate amt of B12 to prevent symptoms from coming back. sciencedirect.com/science/a...
Whilst I am in favour of the natural approach, for PA there is only one path. That is injections for life. Please don't risk your health and mental well-being on her advice. You would be the one to suffer, not her.
About cobalamins, adenosyl is totally natural but needs methyl as well. Hydroxo is semi-synthetic but the body easily converts it to methyl. Cyano is totally synthetic and potentially toxic. I know there's not a lot of cyanide in it but why not just use hydroxo? In production they actually have hydroxo as an intermediate then convert it to cyano. Seems mad to me.
They convert it to cyanocobalamin because cyanocobalamin is a lot more stable and so easier to handle in further processing. Hydroxocobalamin is a naturally occurring form of B12 so I wouldn't call it semi-synthetic except in the sense that any B12 you can buy has been synthesized by bacteria in what could not really be described as a "natural" process. The amount of cyanide in cyanocobalamin is so tiny that you would get more cyanide from eating ground flax.
But I wouldn't blame anyone for using just the natural forms (hydroxo/adenosyl/methyl) as they will likely work just as well. But cyanocobalamin is the most stable form and has the best evidence behind it for increasing/maintaining B12 status. I would venture that this might also be because cyanocobalamin is cheaper and has been available for a much longer time whereas methyl, adenosyl and hydroxy forms really only started to hit the consumer market fairly recently, likely as technologies advanced to keep them stable.
Hydroxocobalamin is the penultimate step in the production of cyanocobalamin. It is not used by the body but needs to be converted to a functional form. It can also be used to remove cyanide from the body in cases of cyanide poisoning, though methylcobalamin is preferred. Cyanocobalamin is cheaper, less well-retained, and many people have reactions to it.
Hydroxocobalamin is a natural form of B12 found in animal products. It doesn't necessarily have any association with cyanocobalamin although the synthesis of cyanocobalamin can involve it.
It is as "natural" as methylcobalamin and adenosylcobalamin. The fact that it needs to be converted is irrelevant as neither hydroxo, methyl or adenosyl are used directly by the body in the form they are absorbed or ingested, they are first broken down to the base cobalamin molecule and then rebuilt into the active forms (methyl or adenosyl). The rebuild process does not use the methyl and adenosyl parts ("ligands") of the B12 that was ingested/absorbed if the absorbed/ingested form was methyl/adenosyl B12.
Methylcobalamin is less well tested , is more sensitive to heat and light, and some have reactions to it. In fact some members do better with cyanocobalamin injections than hydroxo. There isnt really a one size fits all answer as to what is "the best" B12 form. The best form is what suits and works best for you.
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Intro + some PA questions
Depression and PA
Gut Health with PA
Can PA be hereditary?
