Both intrinsic factor and parietal antibody tests were positive ("abnormal") with B12 >2000. Methylmalonic Acid is normal at .28. I have Hashimoto's and other autoimmune conditions and I recently learned my mom was being treated for PA when she passed.
After suffering so many of the symptoms of PA for at least six years (with documentation if it helps) there's no way I can give up the relief I get from supplementation just for a more accurate B12 test. At the same time it would mean a lot to demonstrate PA or rule it out conclusively if only for greater support and understanding, not to mention proper treatment. My hematologist told me to take up to 5,000 mcg of B12 daily but this doesn't control all the symptoms. What more can and should I reasonably do?
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Im surprised you are not on regular b12 injections which go straight into your blood bypassing any of the digestion route.With thus condition you will only be able to absorb passively from sublingual or oral b12.
? 1%
Injections ate supposed to ketp your b12 levels high and further testing not necessary.
.Even though your levels are high it may just be circulating and not reaching cell level .
Lots of I formation and links on here to get a better understanding.
Its a complex and not fully understood or researched.
Oral b12 does nothing for me .
I've trialed it and wax disappointed it didn't.
I'm having regular b12 injections without ant doubt my body can use it .
Thanks so much Nackapan. You help give me the certainty I need to take next steps. Having trouble letting go of a feeling that I shouldn't have to pay out-of-pocket when I pay >$550 per month for insurance and it would be a real hardship to fit them in. I'll try a little bit more to get my provider to see the light.
hello Pamelayne, I agree with Nackapan, with P.A. you will not be able to absorb Orally the B12 you need, and supplementation will result in a very high (total) level in Serum B12 blood test.
The only test that shows what is available at cellular level for the body to use is the Holotranscobalamin test aka the Active B12 blood test. It is considered more accurate than the Serum blood test.
It is the test I took as I was unwilling to stop my B12 daily injections. I had a level of 150.
Thanks ever so much, Wheat. I've never heard of this test and it sounds like just the thing. I didn't know how to counter the doctor's statement that I'm "clearly absorbing B12." Didn't know enough 'til I found this gentle place.
I’m afraid that your doctor is displaying the usual ignorance that most of the medical profession displays about Pernicious Anaemia ) ( or Autoimmune Gastritis which NICE choses to call it now)
Most P.A. patients cannot benefit from B12 orally , only from injections .Taking 5, 000 mcg of B12 daily will result in you having that high B12 reading . That B12 is not reaching where us needs to go — into your cells .You need B12 injections . We don’t know why this happens because it has not been researched .
If you cannot get your docter to give you the regularity of B12,that you need to keep the symptoms at bay , , you will have to self -inject like most of us on this forum .
As injectable B12 is only available on prescription in U.K. , we have to get our supplies from a country where it is available without prescription, namely Germany . It can be injected by I.M. method or subcutaneously .We use excellent German online Pharmacies which are controlled by the German health authorities .
We can obtain needles , syringes etc from U.K. suppliers .If you wish to find out more you can get information here .
Of course you coujd get B12 injections from a private doctor or some beauty clinics which are are allowed to give B12,injections for beauty purposes but not medicinal ! ( yes , that sounds ridiculous doesn’t it ? but it is true !!! ) But this is expensive. Self injection costs about £2.00 if you buy in bulk .
As a P.A. patient you will need B12 injections for life . Injections can be needed from daily . Yes most patients manage on less often injections than that . but it varies enormously. from patient to patient .
This is the hard truth for P.A. patients . But you have now found the best place to come to . Best wishes .
Your statement "...B12 is not reaching where us needs to go — into your cells" feels exactly right, Wedgewood. I'm so grateful you took the time to respond in such helpful detail!
The positive intrinsic anti-body test means you have PA. You don't need a "more accurate B12 test". You results are high because of the supplements. It is not unusual for people with PA to need injections. If you can't convince your doctor to give them to you (initially every other day until you stop having symptoms) you may have to join the rest of us who self-inject (or get someone like a spouse to give us the shots). Stopping all B12 supplementation long enough to get the B12 level to a concerning number is not wise because it could result in more symptoms and possibly permanent damage to things like your nerves.
Your MMA is too high, suggesting you have low "active B12" or holotranscobalamin. MMA should be below 0.17 or so, close to 0.1. If you can, do get the active B12 test done. High serum B12 is normal when on any kind of supplementation, but it does not mean that it is reaching the cells. Go for injections, as tablets, particularly the methyl kind has been shown to be not fully effective (it raises serum B12 without normalising active B12 or MMA).
Thanks so much am111! Feel I should add "Dr" before your name. You certainly fulfill the vocation of one today! Since my eyes glaze over trying to decipher PubMed articles I can't see myself learning these critical pieces anywhere else. Serious gratus and may you receive such kindness on your own wellness journey.
There are a lot of research articles and the information is out there. Unfortunately, it hasn't really entered clinical practice and very generic statements and prescriptions are made, making a lot of us suffer. Clinical trials have been done on oral cyanocobalamin and it is extended without any thought to methyl and other oral forms. Even there, the clinical trials show that oral cyanocobalamin has full effect (normalises MMA) only after 2-4 months. People will continue to suffer and deteriorate during that time. Oral cyanocobalamin can be used only for maintenance, once injections have done their initial job, and the lesser said about oral methylcobalamin the better. Of course, for some people, these things work, probably because their deficiency and B12 absorption is not too bad.
Even regarding injection frequency, it is far too low. Just go by symptoms and take a shot when you feel the need. Good luck!
I must also warn you that I believe the body gets used to a certain level of supplementation. I was taking 3000mcg oral methyl and when I switched to injections, it wouldn't last as long as it did when I took them when I had not been taking any orals.
How much oral or injections have you been taking? If it is a lot, then injections may give you a more pronounced up and down effect and you will have to be careful.
This is news to me am111 and excellent caution. I've been in experimental mode with doses and forms since learning what PA is. For the past week and a half I've taken one Garden of Life "Whole Food" B12 1000 mcg capsule and a Folic Acid 800 mcg tablet along with one KAL Vitamin B12 Methylcobalamin and Adenosylcobalamin 2000 mcg ActivMelt upon waking. I take another KAL with lunch and again before bed. The symptom that most drives how much I take is the hyperosmia as it's the most sensitive. Increasing has helped a lot but I feel I can't miss a dose or I'll crash hard.
You are taking a total of 4000mcg of methylcobalamin daily. My experience was that when I took a 500mcg methyl injection when I wasn't taking any orals, it would last at least a week. In fact, after 4 weeks of such shots, I felt deficient only after a month or so. However, after being on 3000mcg of oral methyl, a 500mcg of methyl shot lasted only 2 days!!! I assume that you already know that only 0.5-4% (average 1.2%) of an oral is absorbed.
3000mcg/day helped me initially but stopped working after a while. On the other hand, oral cyanocobalamin picks up gradually but eventually leads to a strong effect. I think of methyl as instant B12 while cyano has more of a storage effect.
Currently, I take a 50mcg/day cyano shot (equivalent to about 3000-4000mcg/day oral) and after some 2 months or so, it gave me a strong B12 effect (I can feel it by the strong morning wood I get when my active B12 is high!!!).
Given that you are already taking so much oral B12, I would not suggest going to injections now as it will only give you a seasaw effect. Instead, I suggest gradually replacing oral methyl with oral cyano. If you do it too suddenly, you will feel too much deficiency symptoms as cyano is a slow worker. I think it is a good idea to use multiple forms of B12 initially, but studies show that cyano is sufficient by itself after a while, so may be we don't need other forms later on (not sure about this yet and I have been pondering to add a bit of methyl and other forms to my regimen - may be around 250-500mcg/day).
glad your mixture of B12, supplements and injections are working for you. I have hyperosmia really bad and interesting that you would attribute it to PA. Could you elaborate on that please?
B12 deficiency affects nerves, so any nerve can get inflamed. For many years, I had hypersensitivity to light and would get a headache especially in artificial bright light. Now, with B12 supplementation, it is gone (although I still have symptoms of damage in other nerves). People get tinnitus, blurry vision and what not with B12 deficiency. Let us not forget that nerves control all of our sensations and sensory control functions and we don't know which nerve will get affected due to B12 deficiency.
It was in some studies Susanemily. I'll try to find them again. The takeaway is that some PA patients experience a reduction in sense of smell while others a hyper-sensitivity. They've even tested the accuracy of identification of odors and confirmed we're smelling what we say we’re smelling. My spouse wonders if we should present ourselves for work to the perfumers!
This is another tremendous help am111. I was feeling that cyno was upsetting my stomach a little but it may have been the Stevia they put in the tablets. Too, I've read of early concerns it may be linked to cancer, perhaps because of the cyanide molecule?
The cyanide in cyanocobalamin is way too low to be toxic. For the amounts we are taking, it is like 1% of our normal cyanide intake from food!!! Regarding cancer, I have heard that too, but I think those apply to all B12 and not just cyano and the risk is very small even there. I think anything artificial in the body leads to an increased cancer risk, but the risk here is very small and getting B12 into our bodies is far more important than the possibly minor increase in cancer risk, the claim for which anyway is not very well established.
By the way, I can go to 3000mcg or so cyano tablets with probably the same effect, but found that my symptoms flared up (this was on 3000mcg/day methyl actually) when I had a diarrhoea, as the absorption possibly tanked due to it. Hence, I switched to a 50mcg cyano shot every day (using an insulin syringe), so that I get a consistent B12 into my blood every day.
Of course, this all makes good sense. Any med for such a complex condition would carry risks but who among us wants to live without it? I appreciate your personal experience with both forms as I see similarity in my own reactions.
Your positive IFAb and Parietal Cell antibodies do make it look like PA [using the old term!] The IFAb test used may be susceptible to interference from free B12, although it probably isn't, but the Parietal Cell Antibody test method certainly would not be.
If the oral route isn't working then the parenteral route, of IM or SC injections would be worth investigating, but I appreciate the issues you will face with healthcare in the US.
You frame my predicament very clearly, FlipperTD. Indeed, it appears I'll be joining so many here who must take their treatment into their own hands, quite literally.
I really have no explanation for how you can get high results from oral replacement, but no response, although others seem to experience that phenomenon too. That's something else I don't understand. I really do want to see you improving, and hope that you will soon, and if self-injection does it, then so be it.
Self injection isn't such a grim experience. I don't have PA or whatever we call it now, but I did break my ankle and required self-injection of low molecular weight heparin, subcutaneously, daily, for a good few weeks. Not even much of an inconvenience, to be honest, and it kept me clot-free.
Oh I read nothing but kindness in your responses Flipper, hope I didn't convey anything else in my tone! I appreciate your encouragement about injections. It's only that there appears to be a huge stigma here in the U.S. about anything remotely resembling a syringe. I'm prescribed something that looks like one without the needle...the sort of thing we feed tiny kittens or birds with. Technically it's called "BD TUBERCULIN SLIP-TIP 1 mL Syr for use with intranasal viscous lidocaine for facial pain" (Trigeminal Neuralgia due to a dodgy carotid artery). I've had to wash out the same one for more than a year because of red tape between the prescriber and insurance. Not to mention the way pharmacy clerks inspect me as I pass the script over the counter. If we accept everything as an opportunity for learning sorting out injections will be a great test of my self-confidence. 🤔
I understand your issues re syringes. Fortunately, as others have said, getting the stuff from the Canucks over the border might be a simple answer. [My mate Mike in Vancouver is only a 3,500km distance away...]
I know the Becton Dickinson tuberculin syringe as an old friend. There are very many makers of sterile Luer-tip disposable syringes, from 1ml up to the 50ml Bicycle Pump. Likewise, the needles are all good, and largely interchangeable due to the Luer taper hub. They're all fiendishly sharp too. The technicalities of injection are best explained face to face by an expert, and the first injection is best delivered in a clinical environment in case of a reaction. Rare, but possible.
Your posts slip-in stealth like Flipper, and are always so surgically precise and targeted. You do know your stuff as we say over here when very impressed. Thanks for even more help. Inserting needle into flesh doesn’t scare me since a nurse taught me with a blood thinner years ago. You and the others here made a solid bridge to this, though. I’ll keep you updated.
I always found inserting needles into other folks' flesh was very easy. It came naturally to me when I had blood thinners too. Training course took about 30 seconds.
For taking blood, 'Bigger is Better' as 'Bigger means Faster flow' as it takes half the time each time you go up a size for a millilitre to come out. For injections, so long as it'll go through the hole up the middle, anything goes.
This is very reassuring—thanks Flipper. It's odd 'cause I read this days and ago and thought I'd responded. Think I wrote it out then forgot to press the button. Had a minor medical emergency yesterday when spouse's eyes were suddenly extremely filled with blood and a little yellow. One looked far worse than the other so the doctor at hospital treated it as unilateral. I and neighbors agree this might have thrown them off so I came online to research. Anyway, that's where I've been, dear Flipper.
Oh dear. There's always something. I'm currently coated in Hydrocortisone cream [forearms] having reacted to something in the garden. Plus antihistamine tabs. It's resolving. Your problems are far worse. I hope 'the other half' is recovering.
It's always wise to view the end of the needle before you jab it in. I have encountered one which I used to withdraw blood, and it went in with a bit more resistance than normal, BUT THAT'S BECAUSE IT HAD A BARB ON THE END, LIKE A FISH HOOK. It came out but with a bit of tissue hanging on the end. I didn't point this out to the lady, and simply advised her to press on firmly...
But that's vanishingly rare, unless you were to use the same needle to draw the dose up, and then inject it. Yes, it'd save a needle, but honestly, better not!😱
I’ve only just noticed that you are in the USA , not U.K. ! Patients in USA can get supplies of injectable B12 from Canada ,where it is an over the counter item , as it is in Germany . We have quite a few USA members who do this, and they have passed on the information.
canadadrugsuperstore.com is where you can obtain vials and ampoules ( safest ) needles , syringes etc
I hope that you can get the injections that you need with your doctor , and that you don’t need to resort to self injecting . You need sufficient injections ASAP . That’s really important , because delay can result in irreversible symtoms ( I know . It happened to me )
At the same time it’s useful to know about sources of injectable B12 , should you ever need them .
Always take a daily 400mcg tablet of folic acid ( called folate in food or vitamin B9 ) It works together with B12 .
This is another supremely informative and targeted help, wedgewood. I can't tell you how relieved I feel to learn exactly what I need to know and from such empathic and seasoned souls. I look forward to being able do as much for others as you do.
The type of B12 that can be obtained from Canada is the type that is most widely used in USA .— namely Cynocobalamin. This type is no longer used in U.K. This must not be used by patients who have the rare eye disease called Lebers .
In U.K. , Hydroxocobalamin B12 is used , which we obtain from German online pharmacies . I do now of 2 such pharmacies that will deliver to USA shoujd you ever need to know . I can send you details if you decide on Hydroxocobalamin. I haven’t got the details to hand at the moment . but can send them if you wish .
You intuitively picked up on my need for a bit more help with that, wedgewood. I'm convinced the Hydroxocobalamin form is best after reading Cynocobalamin is bound to a cyanide molecule and there are concerns about cancer? Another responder gave me a link to a German pharmacy but I couln't readily discern everything I should get. Likewise on Amazon. I feel like a dolt that I can't figure it out and appreciate your kind hand-holding here.
I’m sending all the information that you need to know about getting Hydroxocobalamin from Germany, to your private messages . But I must say that there is absolutely no need to worry about the cyanide content in Cynocobalamin. It is about the amount that you get in an apple pip! The reason that the U.K. changed from Cyno to Hydroxo is that Hydroxo does not need to be injected so often as Cyno . There is no cancer risk with Cynocobalamin. Just the fact that it should not be used by patients who have the eye disease called Lebers .
Just found your response wedgewood and it clarifies a lot. I did assume the worst about the change in the UK. I'll re-read the suggestive pieces for my own certainty. One thing that had been helpful in switching to a multiple form source is precisely that coverage for both immediate and longer-term. Being so early in treatment and not knowing what I'm doing it makes sense that the variety would feel better.
I was not able to absorb sublingual b12 both during injections and after I discontinued them. My serum levels did not rise as they should’ve with injections and daily sublingual supplements and then plummeted without injections and only sublingual supplements.
After I went back on injections, my doctor ran an MMA test to make sure my body was properly using b12 and it was—the number was actually a little lower than normal US lab values if I’m recalling correctly?
Initial IFAB test was not positive, but was 7 years later.—negative parietal. After my first two separate rounds of injections, two different doctors made me wait without treatment to recheck levels.
One of these same doctors is now of the mindset that b12 serum level tests are a waste of time—of course levels are going to be over 2,000. She also realizes that some people need more frequent injections than others. She orders yearly blood work to make sure my liver is healthy and those levels have always been normal. I am very fortunate to have a doctor who took the time to research on my behalf.
My b12 levels have to be sky high for b12 to reach the tissues. To fully recover, I needed weekly injections and that is my maintenance dose. I learned to self inject because I was going back to work and couldn’t devote an hour a week to get them at my doctor’s office. I prefer hydroxo and obtain through an rx but there’s a shortage of Actavis 30ml right now in the US. I did order Pascoe from Germany a few months ago, but I feel a little different on it for some reason?
I am surprised you could get high b12 levels with just sublingual supplementation with PA? Perhaps you have a functional b12 deficiency or your numbers aren’t high enough to reach the tissues and get better? Going without b12 to get lab work is absurd and will only result in setbacks
From my experience, US doctors are not well educated in b12 deficiency and PA. The very doctor who found my low b12 expressed concern last year over my weekly injections and said I should be able to store in my liver without levels dropping. I said not true because why did I get so sick in only three months without injections? I also said since b12 is water soluable, what’s the problem? He said he’d research it and get back to me. Never heard back from him.
I’d say try a different doctor, but finding one in the US who is knowledgeable is like finding a needle in a haystack. Finding a functional medicine doctor is your best bet but I think they don’t take insurance usually?
I hope you get the help you need! You may have to go the SI route without an rx? If injections help you , then you’ve got your answer. Best of luck to you.
You have indeed been here, mcg-woo, and I appreciate the chance to learn from your experience, I'm seeing a new provider early next month and have high hopes. She's an NLP highly recommended by several people. If disappointed I'll keep an appt a week later with my primary and pitch what I've learned here. Her reaction will determine next steps. Perhaps it's time to ditch the insurance policy and work with a good functional practitioner. You've allowed me to think ahead rather than just react. Deepest thanks.
You’re welcome. This forum is helpful and supportive. I hope things work out with your provider. It’s important to have a provider who cares enough to listen to their patients. If you don’t find this—keep looking. I took the book, “Could it be B12: An Epidemic of Misdiagnoses” to my provider and I really feel like it helped and motivated her to learn more about PA in order to help me. I hope you find the support you need soon as I think anyone on this forum would prefer that option rather than having to go it alone, but sometimes it is the only choice to stop suffering and prevent further damage. Keep us all posted!
You're very kind mcg-woo. I appreciate your saying "I think anyone on this forum would prefer that option rather than having to go it alone, but sometimes it is the only choice to stop suffering and prevent further damage." Something in the way you've explained it makes me see what I've been missing in my quest for validation. This is one of those times when the right thing and the easy thing doesn't necessarily align. I get it, shudder to think where I and so many others would be without those who've braved the unknown and come back to help.
Even if P.A. patients could store B12 in their livers , they could not benefit from it because it gets into their system in the same way as food — into their stomachs . Therefore they cannot absorb that B12 —— No intrinsic factor ( or stomach acid ) Perhaps your doctor did find this out , and didn’t get back to you for that very reason .
Thanks so much for the tremendous resource you've shared wedgewood. You've helped me feel much more confident about taking next steps. Alas, my addled brain can't quite grasp what you mean about my doctor not getting back to me. The convention for as long as I've been a member of our medical collective is for a doctor to respond about any finding outside the bounds of “normal.” I'm certain you're right and that it will explain a lot as soon as I can get it 🧠🙏.
I meant that he or she didn’t want to admit to you that that he/she was wrong ! So didn’t get back to you . Mostly they never want to admit that they were wrong !
Ahh...yes, and this fits well with the manner I pickup from him...that he's an expert with the oncology part and far less comfortable with PA. Thanks so much for shining a light on that!
Good point, Wedgewood! I flat out told him that was impossible because if I could access stored b12 in my liver, then why had I become so sick after three months without an injection? Maybe he learned that and the fact that b12 is water soluble-no chance of overdosing injecting 1mg per week. Appreciate the response!
My long story short. I was diagnosed in my early 20s with Megaloblastic PA. After not being able to obtain my records from that closed practice. I in the last 2 years have had to go to a GI doctor who did an endoscopy/colonoscopy. She was able to see the atrophy in my stomach in the area that absorbs B12. So she "re-diagnosed" me and did what she needed to do to make sure she proved to the insurance company that I need daily injections and it is not unusual to have daily injections. She was the Physicians Assistant. So I have my diagnoses and prescription. Word of advice though...here in the US for whatever reason even those scripts can be hard to fill; with many distributors not carrying the b12 or the supply constantly running out. You can't get Hydroxocobalamin in the US at the moment and I remember many years back when there was only cyanocobalamin on the market; even that became impossible to get at some point. I was left paying $140 for 1ml of Methyl cobalamin from a compounding pharmacy. So finding another source for your b12 is going to be important for the long term. I have had my prescription for a few months and have not been able to get it filled. What I have prescribed is enough for a 1ml shot daily which for me is not always enough. Right now because I am recovering from a surgery I am taking 2ml daily. 1ml in the morning and 1ml split into an afternoon dose and a before bed dose. I hope this helps. The insurance companies have the medical world in a choke hold here in the US.
What a journey you've had with PA, Paint Ladie! Your reply contains many pearls of wisdom and I'm accepting at last that the route so many here must take is actually more reliable than trusting to a script. It's absurd given the potential harm this condition can cause yet here we are. I hope you recover well from surgery and find a stable source to fill your uninterrupted script soon.
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