First, I want to say how much this group has been a help and source of comfort and much needed information! Thank you.
In Feb 2019 I was diagnosed as having "Vitamin B12 deficiency anemia due to intrinsic factor deficiency." At the time I was 35. My doctor did not say "Pernicious Anemia" but after doing some research it seemed that that was the appropriate diagnosis. At the time I was extremely fatigued, depressed, a little unsteady on my feet, had bad lower back pain, and felt mentally 'slow.' My B12 was 190. I also had a positive result for an Intrinsic Factor Abs test (17.2) - however, they tested my IF right after the doctor injected me with B12, so I'm not sure how reliable that result is. I've had a few more IF tests over the years and they have all been negative. All my other tests were in the normal range, including on my parietal cells. Weirdly, my ferritin has been either normal or slightly elevated. I am not a vegetarian and have not had any stomach surgeries.
I was given monthly shots and eventually started self injecting. I did notice marked improvement in my energy and mental clarity when I started doing my own injections. My doctor never really explained much about what was going on with me, which was extremely frustrating and I eventually found a new doctor.
Over the next few years, I've had my B12 tested repeatedly by my new doctor and by specialists. My new doctor says that she does not believe I have Pernicious Anemia as my levels are now "normal." I also saw a hematologist and she made me feel like a hypochondriac and said that my B12 was actually too high! It's impossible for me to believe that doctors could not understand that my B12 is only normal now because I am injecting, but I've had multiple doctors tell me I'm fine and don't need to inject. This actually made me believe that I was exaggerating all my symptoms and never had anything wrong with me! You probably see where this is going next.
I stopped injecting in December of 2023, and since then my B12 levels have just gone down and down.
February 2024: 422.0 pg/mL
April 2024: 271.0 pg/mL
(reference range is 232-1245)
The wild thing is that my doctor does not seem concerned about my B12! She called my levels "normal," but also recognized (in the same conversation) that it was the lowest it's been since I started with her and could explain my fatigue. My doctor ordered another test for me next month....for ferritin and CMP. She has no plans to retest my B12 even though it seems logical to assume that it will just keep going down!
I really wanted to get an official diagnosis on my medical record so I won't have to go through this again with another doctor, but I'm at the end of my rope and I just don't know what I should do next. I'm in the US and I have insurance, so I have some choices about doctors, etc., but honestly the idea of seeing another doctor and having them make me feel like I'm wasting their time makes me want to cry. I don't want to start injecting again because I worry it will ruin any chance of getting an official diagnosis.
Does anyone have advice on a next step? I'm so exhausted all the time and battling this is almost more than I can deal with.
Written by
marlesk
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It is very true that "sometimes tests are wrong". Tests can have false positives and false negatives. The problem with the PA tests is that they can have a high false negative rate. That is, there are many people with PA who test negative even though they have it. The PA tests have a much lower false positive rate. Your result was so very high. I would assume you have PA.
I followed my doctors advice and stopped B12. Big mistake. I almost ended up in hospital again. Why do doctors give advice on things they know nothing about.
You're not wasting their time. They are wasting yours (and needlessly endangering your health).
B12 deficiency and Pernicious Anemia are two different things. Pernicious Anemia is an autoimmune condition that results in B12 deficiency. Pernicious Anemia is not cured by B12 injections. The inability to absorb B12 from dietary sources remains - which is caused by autoimmune attack on intrinsic factor and/or parietal cells.
The combination of a low serum B12 result with matching symptoms and a positive IFAB test is diagnostic of PA. Since symptoms improved with B12 deficiency treatment this gives further confidence in the diagnosis.
If you inject B12 your serum B12 will go higher. This is basic common sense which apparently eludes your doctors. Your serum B12, after you have been diagnosed with PA and begun treatment, is not relevant to the effectiveness of treatment and retesting it is pointless. The autimmune condition that is PA does not disappear when serum B12 comes back to normal levels. If your doctors think that is the case I would ask those geniuses how that could happen.
There is stupidity and there is gross stupidity. You seem to be dealing with the latter I'm afraid.
Hi ACritical - these B12 analogues do exist but without functioning intrinsic factor you won't absorb the analogues nor the real deal B12 orally, so shouldn't really be an issue for those with PA - would be more of a concern for vegans if they are eating a lot of those foods with B12 analogues alongside a very low B12 intake.
Yes, I understand and therefore I posted the link on my Facebook page as a warning. All these modern day diet fads 🤬 .. been promoted even by people of the medical profession. Try everything on our human food table, find what suits you and take in moderation .
You have PA and need injections for life . You need Your B12 readings to be high. You state that you stopped injecting —Does that mean that you were self-injecting? If so you must recommence .ASAP !
Otherwise , You can obtain B12 without prescription from Canada .
Here in U.K. we also have gross ignorance on the part of the Medical Profession regarding P.A . . Members of this forum are also obliged to self inject to keep well . If injecting is stopped for long enough , irreversible symptoms can occur. So do start self injecting.
There are several Canadian online pharmacies that will supply B12?in vials , or better still in single use ampoules. I have the information somewhere . Or you can put out an appeal to your fellow countrymen . for the said information. Best wishes .
I don't know much but I understand that ferritin can read high with inflammation. So dint assume your iron is good. Injecting B12 will quite likely, deplete iron stores, as iron is needed for all new blood cells (and potassium, etc etc.) I became quite anemic after years of injections. Fainting...absolutely dysfunctional, could not have a straight thought. My skin was pale...I worried my body simply would not take B12 in any longer and I was dying 🫣. Nope .needed iron. I injected B12, over..5 years maybe, at increasing dose until I was at EOD. Fir quite some time, I was SI EOD. I've now been able to, for many months, with oral cofactors, reduce injections to a few a month. I'm ready to do more, as needed. Just listening to my body. Not sure what I can offer here other than that; listen to your body. Consider iron and other necessary nutrients. Find a functional physician if you can. An osteopath, naturopath....any provider that might be more apt to work with you rather than against you.
You don't need an official diagnosis. You need B12! It is not wise to stop your injections. You can end up doing permanent damage to your body. It sounds like your doctors are typical of many of the ones people here have encountered. They are not knowledgeable about PA. The positive IF test, the improvements you got from injections, and the down sliding you have now that you have stopped injecting are all very strong evidence. Don't wait until your spine is damaged, your brain is fuzzy and your fingers and toes are tingling. Get your energy back on track! I never got an official diagnosis based on anything other than low B12 myself. But is so incredibly obvious from the improvements I got that this was the problem. There is no point in testing B12 in someone who is supplementing. It is normal to be too high.
Just think of them as a wall. Don't keep banging your head against it, over & over. There are many specialists that have no clue either, so give up that focus & hope. I had a neurologist that told someone following him and 'learning' from him that I needed to eat more meat. 🤔🙄😁
I am a hopeful & optimistic person but the best thing I ever did was letting go of thinking any of them would suddenly educate themselves.
Do I still speak up?
Absolutely.
But I no longer spend much needed energy to fight the insanely ridiculous.
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'It's impossible for me to believe that doctors could not understand that my B12 is only normal now because I am I am injecting."
Thank you all for the wise words. It’s so maddening that we must take our health into our own hands, but based off my own (and seemingly everyone else’s) experience, that’s what has to happen.
If anyone is located in New York and ever happens to find a good doctor, please let me know!
I don't know how far down you are in New York state, but a run over our border will get you vials of cyanocobalamin for anywhere from $5 to $10. Just walk in to any pharmacy and ask for one. If you don't want to say Give me twenty🤩, do another pharmacy - rinse and repeat.
If you are as far down as NYC, well a weekend away might be advantageous.
Do not know how any possible border inspection would deal with it, but it is a vitamin.
If you can somehow pay out of pocket for a naturopathic doctor (some offer very affordable monthly membership options), I would go that route since you're in the US. I only rely on my medical coverage for catastrophic care, at this point. I have a trusted ND, and she has saved me the headache of all the run-around you have mentioned above. I hope and pray you can find someone who will listen to you. You definitely need injections! Even my ND can't know everything about everything, so when I present her with info from PAS or other great sources, she says, "okay, let's do that!" Find an open-minded naturopath, if that is something your finances can handle, and don't look back. Be well!
Depending where you live, self testing is available through several online lab companies. Ulta Lab has been the least expensive for me in the US, using a Quest laboratory. (Order through Ulta not Quest) Different locations may use a different lab for blood draws.Unfortunately, self-testing means insurance does not pay, but there are often tests on sale.
You can then document the decrease and provide the evidence to your doctor.
If your doctors seem reluctant to treat you adequately, may be worth discussing with them that delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be damaged.
You would need to be a PAS member to access complete article.
There have been cases of people developing SACD from B12 deficiency even with normal range serum B12. If you search for "Turner SACD Functional B12 deficiency" that should show one of these cases.
Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose Functional B12 deficiency.
I found a few documents when I searched online for "US B12 deficiency guidelines".
If you search for "Sally Pacholok B12 deficiency slide show" it should bring up a slide show she presented at an anti-ageing conference some years ago. Sally Pacholok is one of the authors of the book "Could it be B12?".
I'm not medically trained just someone in UK who suffered for years from unrecognised and untreated B12 deficiency.
"My new doctor says that she does not believe I have Pernicious Anemia as my levels are now "normal." I also saw a hematologist and she made me feel like a hypochondriac and said that my B12 was actually too high!"
I wish I could say that your experience was unusual but from years of reading posts here I don't think it is....I think it's very common.
Many of us here have met doctors including specialists and other health professionals whose knowledge of B12 deficiency is lacking.
Some of us including myself have had difficult experiences including being "gaslighted". It's not uncommon for forum members here to be diagnosed with psychosomatic symptoms, MUPS - medically unexplained symptoms, hypochondria, told symptoms are due to depression etc....quite common for people here to have a diagnosis of ME/CFS/Fibromyalgia in their medical record.
Misdiagnosis of B12 deficiency as other health conditions
WHY have you stopped si b12 when clearly yr body is telling you it needs it
You cannot test b12 once on it, takes 4mths to leave yr system, and for the IF test its 2wks min, just get a false test result
Testing for PA is notoriously unreliable, parietal cells test is discredited, and the IF test is only 45% accurate - pa negative blocking antibodies make yr pa 'invisible', hence why a negative test result doesnt mean you dont have PA
There is no gold standard definitive for b12 tests, so always go by symptoms first and test results second
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retraction of diagnosis for PA and uncertainty over what to do about it
MrJustatip's diagnosis - FINALLY.
Tracking your B12 changes after injections? (Please share if so)
Post-treatment lab results -- interpretation help appreciated!
