hello All,
so I received my blood test results today for intrinsic factor and it is 18 high over the limit of 1.1. in February I was at 1.1. does anyone have any suggestions on why such a jump. I have been injecting b12 for 1.5 months now. would that have changed anything? my CBC was really good hemoglobin was great. MCV was at 101. what could that mean?
thank you,
Rosina
As a reminder/proviso, I am not clinically trained. The following is only my guess at what may be happening based on my reading about PA.
So, here is my amateur theory on what might be happening. As you get sufficient B12 (and other nutrients), your body notices "oh gosh, what a mess down there", and starts to repair your gut. This probably includes repairing the parietal cells (which produce stomach acid and intrinsic factor), and trying to produce more intrinsic factor to absorb much needed B12.
With some dramatic license:
Unfortunately, you have a rogue security team, who, in normal circumstances would be protecting the construction site and making sure all is going as it should and no trespassers are wandering through the construction site (that is your immune system).
Unfortunately, this security crew are conspiracy theorists and have gone rogue, believing that the construction crew are building a nuclear weapon to kill everybody. They have therefore turned into a rogue demolitions team and are going about the repair site blowing up the partially reconstructed parietal cells (which you need) and obstructing the intrinsic factor from going about their job. They really are a bloody nuisance.
What you really need is some kind of men in black style memory zappers to use on the rogue security team, to get them to return to their normal, relatively benign (if tough) duties and to stop attacking and obstructing the construction team and intrinsic factor who are only doing their job.
Coming back to earth:
The high intrinsic factor antibody may be a sign of the high level of antibody activity, which is the self-defeating nature of PA. Your body is trying to get you better, while your rogue security team (the antibodies to intrinsic factor and parietal cells) is working furiously against that progress (because they are crazy) Unfortunately this all normal enough for PA I'm afraid.
Apologies for the poetic license.
Disclaimer: Any resemblance to real physiologic systems, living or dead, should be considered proximate and not exacting. Certain compromises have been made to square the exact processes with the analogy 🙃
hello Technoid,
wow that sure does make sense for it to all of a sudden jump like that. from being normal then jump up that fast, and I've been doing injections. I hope everything settles once I get my B12 stored up in my body which will be hopefully around I would say December maybe, but there has been improvements throughout this journey so far up to now from last November dying. I sure do have faith with this PAC forum with everyones journeys and everyones over coming the deficiency. Thank you again. Tuesday I go to the Dr. AM I'll let you know what I am told.
This forum is a lifesaver!! Truly. I was 'dying' a couple years ago with one injection a month. I now inject everyday thanks to advice from all the great people here. I am way better than before. I will always have issues, but they are much better. Everyone is different and needs different amounts of b12 do to different levels of severity. I think I'm settling in at about 30% of who I used to be. Not great but better than I was 2 years ago. Some days I might even feel 40% better. Others might be more or less. It depends on how long you went without care. I feel anyway. Plus often we have other AI issues that complicate it. Like sjogrens, SCD, Hashimotos, etc. But this forum is the place to come for help, and so you don't feel alone. I owe them everything here.
just a thought after reading this Technoid,
with the intrinsic factor can we get this back to normal?
The short answer is no. The long answer is still no, but there is some interesting research happening around autoimmune diseases (but not PA specifically) that was shared by Jillymo which entails "resetting" the immune system so that it stops attacking non-malicious parts of the body.
I'm not aware of research on this specific to PA but I do hope someone is looking at it as it is (in my opinion) probably the best hope of a cure, since B12 injections, especially very frequent ones can be quite a nuisance.
It is anyones guess as to whether this will pan in out in our lifetimes. I would say, don't pin any great hopes on it and just keep injecting.
well thank you Technoid,
I will just keep hangin in there through all the symptoms of B12 recovery for now. it is getting better from when I started for sure. I'm having a stomach problem today, usually in the morning only but today its been on and on, as this has been on days through out this b12 deficiency I read that this is a symptom.
My stomach (unusually) wasn't happy with me last night either. But the indigestion might be causally related to downing half a large home-cooked pizza, beer and coffee. Slight possibility. Can't eat well all the time, especially not on warm summer weekend evenings! 😅🤣
I love this! Take all the poetic licence you need. It brought a much needed smile to my face.
Wow, wonderful analogy. Thanks for the fun, we all need it.x
Hi. [Scientist, not medic, but I did perform these tests for many years.]
Your recent result is clearly [to me] a reasonably strong reaction for IFAb. It's certainly not likely to be interference, whereas your earlier figure close to the cut-off wasn't definitive [in my opinion.] But this [to me, at any rate] reflects that you have PA, or whatever we choose to call it now. I like Technoid's response!
This autoimmune response is classical, and if anyone were to continue measuring IFAb levels on you, I suspect they could go higher than we've seen so far. There isn't any justification in doing this, as you've already reached a definitive result. However, from the lab's point of view, a strong positive sample does come in useful for control purposes. That doesn't help you however.
The actual level is somewhat arbitrary; it's just clearly 'positive', and I think it's unlikely that this will go away. It's highly unlikely that you would start absorbing dietary B12 once more, through the action of Intrinsic Factor. The antibody effect it inhibiting that already. You're injecting B12 regularly, and that's bound to help you; that's the way forward.
Just keep on keeping on, doing what you're doing, and keep in touch with us.
Good luck.
thank you everyone! this place is an answer to our prayers from God. I would not know any information and support without you all. Now we don't have to be without support through this journey. God Bless everyone. I will see what the Dr. says on Tuesday and let you know. and now she should have no reason to keep the injections to a minimum. I need to tell her I need them EOD. Pray for my visit.
Hoping the increased antibody levels help get you the more frequent injections that you need 🙏
hello my oldcat,
thank you for your prayers, I was wondering so does the antibodies get higher with time? I don't know much about pernacious anemia yet, and I'll see what my Dr. knows on Tuesday. She is a general Doctor and hopefully she does research and listens to me. she has been in the past very good to take into mind what I ask for. I use the Methyl B12 and have to buy it at the compound pharmacy and get it shipped and need a script from the Dr. I also have used cyano and thats the kind they have here in our town in California. I need to inject EOD for now. thank you all for all your support.
Rosina
My antibody test came back negative. Following Technoid's reasoning, I wonder whether that might change after injecting eod for some time...
well maybe it seems all so confusing, and I've started reading on the computor and yes the injections can for mess with the results and to me that makes it more confusing. in just several months it jumped. and I literally got my injection and 30 min later had my blood drawn, I or my Dr. had know idea that it would mess up the results. were you over the range at all? for the anitbodies
No, under range, a negative result meaning no antibodies.
positive then negative intrinsic factor 
Thought about Intrinsic factor 
intrinsic factor test
Intrinsic factor 
INTRINSIC FACTOR ANTIBODY positive result
