An excellent perspective and thought-provoking points from Julie Wichlin, our support group co-ordinator in the USA, whose experience undoubtedly will resonate with many whatever your location. Sadly, as Julie also has found, many of us have to advocate for ourselves in the journey through misdiagnosis and adequate treatment. Julie is a great supporter of PAS and her online support groups are well attended and a valuable source of information, support and camaraderie. Details of upcoming meetings can be found on our Events page.
The Silent Epidemic of Pernicious Anemia and the Medical Blind Spot That’s Costing Lives
I spent decades losing my health one misdiagnosis at a time.
There were ER trips, neurologist visits, suspected strokes, unexplained body pain, vision problems, and unrelenting fatigue. My gallbladder was removed. I had nerve conduction studies, MRIs, colonoscopies, and surgeries. There were times I could barely walk. Times I couldn’t think straight. Times I thought I might not survive.
And yet, through it all, my doctors told me I was “fine.” My bloodwork was “normal.” Especially my vitamin B12.
Except—I wasn’t fine. And my B12 wasn’t “normal.” I had Pernicious Anemia, a life-threatening autoimmune condition that prevents the body from absorbing and metabolizing vitamin B12. And I had it for decades—undiagnosed, misunderstood, and slowly destroying my body from the inside out.
The B12 Myth That Could Be Killing You
In conventional medicine, B12 deficiency is considered rare, simple, and easy to treat. In reality, it is common, underdiagnosed, and routinely mistreated. Pernicious anemia is one of the leading causes of functional B12 deficiency, yet most doctors have little to no training in how it works—much less how to catch it before damage is done.
Here’s the kicker: blood serum B12 tests are unreliable, especially in people who have been supplementing (even just with a multivitamin). If you’ve taken B12 at any point before testing—even a small amount—your blood levels may look “normal” or even “too high.” But that doesn’t mean it’s being absorbed or used properly by your body.
And that’s the critical mistake: B12 in your blood does not equal B12 in your cells. Pernicious Anemia affects how your body absorbs and metabolizes B12. If your cells are starving for it but your bloodstream is full of unusable B12, you can still experience severe neurological and systemic symptoms—while doctors tell you to stop taking B12 because your levels are “too high.”
It’s not just incorrect. It’s dangerous.
What B12 Deficiency Can Look Like (Spoiler: Everything)
For me — and for thousands of others — it looked like:
- Widespread nerve pain
- Brain fog and memory problems
- Chronic fatigue and weakness
- Depression and anxiety
- Shortness of breath and dizziness
- Digestive issues like IBS
- Unexplained weight changes
- Vision disturbances
- Balance and coordination trouble
- Burning tongue or mouth
- Suspected autoimmune diseases like MS or lupus
Over time, untreated B12 deficiency can cause irreversible neurological damage, dementia-like symptoms, and even death. And yet, most people are dismissed long before it reaches that point. They’re told they’re anxious, aging, depressed, dramatic—or worse, drug-seeking.
The truth? They’re metabolically starving—and they know something’s wrong.
Why This Is Still Happening
Pernicious Anemia has been recognized for over a century, yet it remains one of the most misunderstood and under-researched conditions in medicine. Medical schools barely cover it. Most general practitioners don’t understand it. And specialists often miss the forest for the trees.
We need better testing—not just serum B12, but also methylmalonic acid (MMA), homocysteine, and holotranscobalamin levels, which offer a more complete picture of B12 function.
We need better awareness.
And we need to listen to patients.
What You Can Do
- Trust your body. If you’ve been told you’re “fine” but feel far from it, keep pushing.
- Ask for more comprehensive testing. Especially MMA and homocysteine.
- Join support networks. The Pernicious Anaemia Society is a great place to start.
- Educate your doctor. Many are unaware of these issues—not because they don’t care, but because they were never taught.
- Don’t wait. Neurological symptoms can become permanent if treatment is delayed too long.
It took me years to uncover the truth. Years to start healing.
But I’m one of the lucky ones — I finally found answers. Many people never do.
If you’re struggling with mystery symptoms and being told everything is “normal,” consider this your invitation to dig deeper. You are not crazy. You are not alone. You are not fine.
You might be slowly dying—and your doctor may not even know it.
But now you do.
Thankyou, Julie Wichlin.
I was very lucky in having an experienced primary care doctor who noticed that, although my B12 had only been just below range, I was not responding to the usual B12 loading injections, and worsened considerably on the 3-month maintenance injections that is usual in the UK.
She tested my MMA, found it to be raised and diagnosed functional B12 deficiency. She had already ruled out renal problems as a cause for raised MMA So I was restarted immediately on 2 injections a week after results returned. Only then were gradual improvements noted.
After that, she sent me on the rounds of haematologist, neurologist, gastroenterologist etc. and tests eventually eliminated all other possible causes of symptoms.
There are few GPs who are able to investigate and monitor, know what they are seeing, know where to get advice and confident enough to trial a different frequency, because they trust in their own observational skills (sometimes despite opposition from group practice staff). There are many more needed, and they should be teaching the next generation of doctors.
So glad to hear you have a doctor who truly understands B12 deficiency. It’s refreshing and encouraging to see this level of insight and care.
Thank you Julie for sharing your story as well as providing great knowledge. I’m grateful to be a member of the US support group. We are not alone in this journey.
Thanks, Nicolle.. I’m so grateful to be part of this community too—it means a lot to know we’re not alone on this journey. ????
I was diagnosed with Pernicious Anaemia 12 years ago. Had injections every 6 weeks. Then retested a few months ago because they lost my previous diagnoses and told I didn’t have PA. I distinctly remember my then doctor sitting me down and telling me I had PA and explaining it all to me. They’ve agreed to give me an injection every three months because I have Coeliac Disease. My numbers have gone from 2,000 to 300 in a few months. This has all traumatised me. I’m not sure who to trust now.
I’m so sorry you’re going through this. If you were diagnosed with PA, you still have it—it doesn’t go away. You’ll need lifelong treatment with injections.
If you have Celiac, Paula, I hope you will read Dr. Gundry’s THE PLANT PARADOX and educate yourself on what, increasingly, researchers believe, that diseases like P.A. (though partly genetic) are also the product of today’s highly inflammatory, high-grain, high-dairy, high-chemical additive diets.
As to being traumatized, so common among we P.A. people. Imagine what happened to me: As I trooped from doctor-to-doctor, clinic-to-clinic, hospital-to-hospital (including university hospitals that should have been cutting edge), I went undiagnosed for 31 years. And when I finally got a diagnosis, it was how most of we Americans get diagnosed, a chance encounter on the internet or, in my case, a chance viewing on a T.V. program about pernicious anemia.
I demanded my primary (for a change) test me correctly with an intrinsic-factor antibody tests, and there it was. But then, a new problem, doctors in the U.S., substantively (since for-profit medicine has migrated toward more profitable diseases!) know nothing about P.A., or that B-12 isn’t a miracle cure, it is merely help for part of the symptoms.
Hello Paula, just with your case, i have had a similar issue and the doctor ran a third test (so you would need another 2 since they lost the original test results) and my results went positve, negative, positive for Intrinsic Factor, which does indicate a PA issue.
Even when i have further tests they are sometimes positive and sometimes negative, and due to what PA actually is any negative result, even 1 in 10 means there is an issue with you Intrinsic Factor, and you have PA.
I am in South Africa though, and i have to pay for doctors and tests, and im assuming you are in the UK, which is causing your main issues with treatment. I would say you not only have PA but also a serious Vitamin B 12 deficiency since your levels dropped so much when our body is supposed to store B 12 and release it into your body as needed.
I really do hope you get proper treatment, and i know what not having the injection for a while feels like, and i wish you all the best.
Thank you PAS for this platform.
My doctor is trying 2 weekly injections. I do not feel well. Terrible tinnitus, pain in my arms and legs plus brain fog. I was told I am getting old so must expect forgetfulness and arthritic pains. Yes I turned 82 on Easter Sunday but I was doing zumba, mowing the lawn. going for long walks. I do have Hashimotos but isunder control. Pernicious Anemea is not under control. This has also been blamed for my symptoms. This is the reason I have become a member of PAS. I have printed information for my doctor but she hasn’t read it. Looks like I will have to shop around for a doctor who will help.
If you have a PA diagnosis and your symptoms persist, it is likely you need more frequent injections. Symptoms can intensify briefly at the onset of treatment through a process called “reversing out”. If other potential causes for symptoms have been ruled out, consider self-injecting more frequently.
Hi Julie,
Thank you for this article. My journey has also been complicated. I was diagnosed with pernicious anaemia in 2017, given the two week loading doses then told to visit the GP nurse every three months for B12 injections. Was not told anything further.
In reality, my health declined significantly over the next years. I was experiencing all the symptoms you mentioned in your article and suffered excruciating pain with no empathy and support from the healthcare system. With my insistence, my GP sent me on a merry go round of specialists with no definitive diagnosis but that of fibromyalgia, given antidepressants and told I was fine. It was my persistence again and searching for answers online, that I discovered the Pernicious Anaemia Society that my world changed for the better. For three years I self treated daily with methylcobalamin hoping that I would eventually experience a turn around in my health. I have now moved to weekly self injections, with most of my neuropathy gone and specifically,
I’m able to walk freely without pain. I recently had to see my initial GP who diagnosed me with pernicious anaemia and he was very surprised that I’ve managed to do all this against the medical recommendations. Every specialist had told me that I would be causing myself more harm than good and that I would be overdosing B12 and it would be toxic to my health. I have proven this theory wrong!!!
I sincerely believe that the medical community have treated this autoimmune disease wrongly and that their knowledge needs to be updated and changed accordingly. I can only imagine that there are people still suffering from misinformation from mainstream medicine about pernicious anaemia, it’s time for change and the correct knowledge given to doctors. This forum was a god send for me and I’m eternally grateful. Thank you also for your informative article.
Good for you for taking control of your own treatment!
Effie, your journey sounds so much like mine, with me made so much worse by the propensity (at least in the U.S.) of doctors seeing proton-pump inhibitors (acid suppressors) as a solution to all things digestive. (I have ghastly allergic gastritis and SIBO.) So, I had pernicious anemia (and didn’t know it) and what were they doing? Further suppressing what little acid (gastrin) my stomach was producing, something that continued until (at an emergency room) a young doctor informed me that NO ONE should ever take proton-pump inhibitors except briefly. He summed it up, “Your doctor is destroying your stomach!”
I do hope you’ll take the path that I (a former reporter covering a national laboratory, Los Alamos National Laboratory in New Mexico) decided to take before I was diagnosed–incidentally, by me! Since doctors showed no particular interest or knowledge, I decided to educate myself, especially in all things relating to inflammatory disease, digestive issues and the human microbiome (some of the research done in Los Alamos).
If you haven’t read them already, I urge you to read every book you can find by doctors Gundry (Especially Gundry!), Davies, Amen and Hyman, all doctors who are saying that it’s time to stop viewing illness as we long have because, for the first time in human history, thanks to knowledge of the human genome and the human microbiome, we can have more power over illness than humans have ever had, including an understanding of what might have caused the genetic error that causes P.A.!
And, by the way, I agree absolutely with your statements about the Pernicious Anemia Society. While the doctors I went to were a “wealth” of MISINFORMATION, I have found the PAS to have represented a wealth of knowledge. I especially have found value in blogs, such as this one, about other peoples’ journeys. I practically have panic attacks thinking what my life would be like without the information they have given me, but I’ll add, it’s sad when we must depend on “societies” for that which doctors should provide.
(BTW, you CANNOT overdose on B-12, and this is just more evidence of poorly educated doctors. My daughter has a M.S. degree in nutrition and assures me that the B vitamins are water soluble and, if your body doesn’t need them or can’t use them, it will simply throw them off harmlessly in the urine. Yes, with some vitamins, like vitamin A (NOT water soluble) care is required, but if your specialists are saying that, they are just showing more of their ignorance!)
I have been treating my symptoms not the numbers for several years now., buying the ampoules of hydroxocobalamin from Germany. My GP still prescribes 5/year which I accept.
A very good friend, a retired GP, once told me he treated B12 deficiency by the symptoms, not the numbers. If it took daily injections to sort it the so be it. The stuff is cheap enough and safe.
I do likewise. I have arguments with the GP’s, they might learn something. At the moment I inject about weekly. That may change but at 80 I go my own way.
Good for you for taking control of your treatment protocol!
In the 9 years since, by coincidence, I FINALLY FOUND OUT WHAT WAS WRONG WITH ME, I have been on a journey to learn exactly what pernicious anemia causes, since doctors have been of no help. I want to say that this blog is one of the most VALUABLE POSTS I have ever encountered, with it offering so many explanations on the similarity of many P.A. symptoms to Type 2 diabetes, with it helping me understand why, when young (though not yet with a full-blown illness) WHY I was experiencing some symptoms similar to an adopted older sister with Type 2 diabetes.
I just hope that the Pernicious Anema Society (a resource of HUGE SIGNIFICANCE) will work to, perhaps, build a web page that brings the many important elements of its blogs together for those making a search and TRYING TO FIND OUT ABOUT A DANGEROUS DISEASE WITH LITTLE HELP FROM DOCTORS. Knowledge is power!
Thank you for this insight and honesty , it’s so reassuring to not feel alone and to know others struggle to feel believed .
In the most strange turn of events ,after seeing neurologists for chronic and excessive migraine , gastro for significant weight loss … I was being wheeled down to theatre by a chatty porter , who noticed the white patches on my skin and told me that his sister had the same … was nearly dying when they diagnosed her with PA .When I met with the consultant afterwards , I asked the question , have I been screened for PA …. ????. Not considered that , but it is viewed as a psychosomatic illness really !!! Was his considered medical response . I insisted on testing and am diagnosed with PA along with coeliac . My life was change by the porter … who recognised what 4 consultants , only looking at their own speciality , not the whole picture , could not . I have permanent nerve damage , everyday is its own battle, but I am here , unlike two women I met through the hospital who died very recently … they were not diagnosed until it was too late . Their cause of death was not recorded as PA , it was multiple organ failure and the other was heart failure , both under 50. How can that still happen now ??
I’m so glad you finally got an answer, Simone! Unfortunately, many practitioners lack adequate training in effectively screening for functional B12 deficiency.
So many doctors and nurses treat you as if you have a psychosomatic disorder when you ask for more frequent injections because, “your levels are already too high”! I live in Australia and we can buy B12 injection vials over the counter at any Chemist but, try to buy needles!! They treat you like a druggie. I finally found one who will sell me a few but they have doubled the price to a dollar each and there’s only one lady there who knows I have authority to buy them.