The Autoimmune Disease No One Has Heard Of: What I Learned from a Pernicious Anemia Diagnosis – Real Food Whole Life

The Autoimmune Disease No One Has Heard Of: What I Learned from a Pernicious Anemia Diagnosis

It started with a metallic taste. Or at least that’s what I noticed first.

We were in the car, returning to Portland, Oregon, after attending my dad’s retirement party in Eugene.

I was riding in the passenger seat, Andrew was driving.

And as I looked out the window at the green pastures rolling by I suddenly became aware of a strong metallic taste in my mouth. 

I thought the taste was strange and annoying, but other than that I really didn’t think much about it.

But over the next few weeks the taste became a constant. No matter what I tried, I could not get it to go away.

I brushed my teeth more often, bought new mouthwash, made a dentist appointment.

Weeks went by, but the taste only got worse.

At the same time I started feeling a deep sense of exhaustion. Not the normal dragging tiredness of the daily grind. No, this was different. 

It felt like my life-force was slowly draining away.

Then my feet and toes started tingling. I originally blamed the tingling feet on the fact that I do barre class in bare feet. 

I decreased my workouts and stopped doing anything on my toes. Still, the tingling remained.

Then I noticed a slight ringing in both ears.

It was the ear ringing that eventually made me make the first appointment. 

I should note here that it took me 4 months from noticing the first symptom to make a doctor’s appointment.

4 months.

As a working mom I have a tendency to put my own medical appointments on the back burner.

If my daughter has a medical need you better believe I’ll get her to the doctor. But when it comes to myself I tend put things off.

So let me pause here to urge you to do one thing. 

If you have a nagging health issue, if your intuition is telling you something is wrong, please make an appointment. Do not put it off. Do not ignore your body. Do it today. Do it right now. 

After 4 months I finally stoped putting my health off and made an appointment. 

I arrived at the doctor’s office with my list of mystery symptoms. Constant metallic taste. Extreme fatigue. Ear ringing. Tingling feet. 

Not sure what to make of the symptoms, my doctor ordered a round of standard of blood tests and sent me on my way.

When the first round of tests came back everything looked pretty normal. Which I will admit bummed me out. 

Of course I didn’t want the tests to reveal anything bad, but the fact that they revealed nothing was upsetting.

“Is this all in my head?” I thought to myself, “Am I just making this up?”

After the tests came back there wasn’t any immediate follow-up, so I went back to my life.

My symptoms progressively got worse. I became more and more exhausted. Making it through the day began to feel like an impossible task.

I cried every afternoon around 3:00 pm because I was so drained. I started to think I was going to die. 

As in, I really thought I was going to actually die.

I went back to the doctor and reported how I was feeling. 

I realize now that I had two things working against me. First, I looked then, as I do now, like a healthy person.

I’ve since learned that this, combined with the fact that I have a young daughter, made it more difficult for me to get any doctor to take the urgency of my situation seriously.

I was told repeatedly by doctors that I was exhausted simply because I was a working mom. 

Which, of course is exhausting. But I happen to know the difference between normal exhaustion and feeling like you’re actually dying

And let me tell you, there’s a pretty big difference.

At the next appointment I started crying the minute the doctor walked in. I didn’t have the energy to do anything else. 

Not knowing what to do next, the doctor referred me to an Ear, Nose and Throat doctor. Um, okay.

I was pretty sure this was not the correct next step, but since I was still experiencing the metallic taste in my mouth I went with it.

At the ENT I had a sinus scope along with several other rather unpleasant tests, all of which revealed nothing of interest.

Then I was referred to an allergist. Again nothing.

Next it was the neurologist, who didn’t think my symptoms were neurologically related, but wanted to do an MRI as a rule out.

At this point I was losing my ability to advocate for myself. I knew I wasn’t making my symptoms up, but I also didn’t think I was ever going to get an answer.

I remember one day telling my parents that I was going to have to quit my job because I didn’t have the energy to work. 

While I was talking to them I put my head on the dining room table and started to cry. 

Elle, seeing my distress, brought a pillow over and put it under my head. “It’s okay, mama,” she said, “no cry, mama.” She had gotten so used to seeing me crying, and it absolutely broke my heart.

Then that spring we went to Colorado for my childhood best friend’s wedding. While there, I mentioned some of my symptoms to my best friend’s mom, who had recently been diagnosed with Celiac disease.

She was concerned and asked about the blood tests I’d been given. Specifically she asked if I’d had my B12 levels checked. I told her I hadn’t, and promised I’d have them checked upon returning home.

Once home, I emailed my doctor and asked for a B12 test. 

She ordered the test, and when the results came back they revealed that my B12 levels were at 100. 

The normal clinical range for B12 is 180-914 (though 150-400 is considered borderline).

Finally we were onto something.

I should note here that most people get enough B12 through diet alone, unless they follow a vegetarian or vegan diet, as B12 is only available via animal products.

Since I am not a vegetarian or vegan, and since I eat a healthy diet, there was no dietary reason why my levels should be so low.

As a side note, if you are a vegan or vegetarian, you might want to consider talking to your doctor about your B12 levels and about taking a high-quality B12 supplement.

Since B12 is only available via animal products, it may be possible that you are not getting enough through diet alone (breakfast cereals and many soy products such as tofu are often fortified with B12, but if you don’t eat many processed foods it’s probably a good idea to make sure you’re getting enough through supplimentation).

After reviewing the test results, my doctor recommended that I start taking a megadose of oral B12, which I started immediately.

After 4 months of the oral B12 I didn’t feel much better, and my numbers weren’t much higher, so I asked to be referred to a specialist. 

Nearly 2 years after I noticed my initial symptoms I saw a hematologist. When she entered the room I started to cry (notice a theme?).

I literally begged her to help me. 

After looking at my numbers she ordered a test for Celiac disease, one for intrinsic factor, and also agreed to order a course of B12 injections.

I started with the B12 injections that day, and came back for weekly injections after that.

Within a few weeks I started to feel better. Not 100% better, but a tiny bit better. I felt hopeful for the first time.

Then the Celiac test came back negative, and the intrinsic factor came back positive.

Not knowing what the second test meant, I went back to the hematologist. She explained that intrinsic factor is required in order for the body to to absorb B12.

Without intrinsic factor B12 simply won’t be absorbed, regardless of diet.

She then explained that people with low intrinsic factor have pernicious anemia, an autoimmune disease.

Finally an answer.

After some research on my own, I learned that pernicious anemia is more common in older adults (60 and over) and that it wasn’t easy to diagnose until relatively recently.

In fact, it’s called pernicious anemia because pernicious means deadly. In the past doctor’s did not well understand B12, nor were they able to test or treat it accurately. Therefore a pernicious anemia diagnosis was a fatal diagnosis.

I feel lucky, then, to live in the time and place I do, and equally lucky to have finally received a diagnosis. 

I am also incredibly grateful to have health insurance, which covered all the diagnostic tests and the B12 injections, a luxury many do not share.

Today I am happy to report that my B12 levels are well within the normal range. I still receive injections monthly, and go in for blood work to test my levels quarterly.

I’ve also since learned more about B12 and pernicious anemia, though there is a true lack of quality information available about the former.

The symptoms of low B12 can vary significantly, I’ve learned, and are often mistaken for something else or ignored completely, which is concerning, as left untreated, clinically low B12 can also cause all kinds of issues, including irreversible cognitive damage. 

Luckily I don’t seem to have experienced any permanent damage, other than the slight metallic taste that just won’t go away, and frequent fatigue flare-ups.

My hematologist has been helpful when it comes to the B12 injections, but she is not a specialist in the autoimmune aspect of pernicious anemia, and I have yet to find a specialist who is.

All-in-all, I currently see my health very much as a work in progress. 

I’m incredibly grateful to have discovered the B12 deficiency, and I also still hope to better understand and manage the pernicious anemia. 

My biggest takeaway from the experience is that it is absolutely essential to listen to your body and to advocate for your own health.

If you think something is wrong, don’t put off the doctor, and don’t give up until you find an answer, even if it doesn’t come right away.

I’ve also learned that while diet is extremely important to overall health, it’s not always enough.

I believe that my recovery has been expedited due to a real food diet, and I also believe that the B12 injections were and are required. Diet alone would not have been enough.

The path to a pernicious anemia diagnosis was long, and my hope in writing this is that it might help someone else find answers a little sooner.

It is also to let those of you with the same condition, or other autoimmune diseases, know that you are not alone. I am here with you and for you.

Disclaimer: I am not a medical doctor, and this post should not be considered medical advice. The information shared is based on my own research and personal experience. If you have medical concerns, please consult a doctor as soon as possible.

Do you have experience with low B12, pernicious anemia, or an autoimmune disease? Share your story with the community, along with what’s worked for you.

37 comments to " The Autoimmune Disease No One Has Heard Of: What I Learned from a Pernicious Anemia Diagnosis "

  • Blaise

    Robyn, thank you so much for sharing your story! Although I haven’t experienced such severe symptoms, I noticed my energy level drop significantly last summer. It was so not normal for me. I was falling asleep at work even though I was sleeping/eating/exercising right, and I just knew something was wrong. I went to Urgent Care since I had just moved to a new city & state and didn’t have a primary care doctor. I literally felt crazy when I asked her to take my blood just to check because she had asked me all these questions about different symptoms that I did not have. My only symptom was a lack of energy and I definitely felt a little judged by the doctor for that. Anywho, turns out I had low iron (not anemic, but definitely low!). I quickly found a PCP to follow-up, started taking Iron and Vitamin C pills to help me absorb the Iron, and have felt sooo much better since. Anywho, that’s my long way of saying that I could not agree with you more about always listening to your body and advocating for yourself. So happy you found the answer and sending you lots and lots of love always. Thank you for all you do! xoxo

    • Robyn Downs

      Blaise, good for you for taking care of yourself! I’m so glad you listened to your body and were able to find a solution. Cheers to feeling good!

  • Katie

    Thank you for sharing and for your honesty, as always! I am so sorry to hear that it took so long to diagnose and that there is a lack of information on the autoimmune disorder. I recently had some health issue of my own and my doctor believes it’s related to an autoimmune disorder. I was referred to another doctor and am waiting to see them next week. But man do I cry all the time thinking about it! I left the doctors office and pulled across the parking lot and broke down crying. If I think about it too much now, I start to cry! Reading this post has me in tears! Do we see the common theme? I’m so happy to hear I’m not alone! Right now I’m just trying to find some ways to reduce my stress (related to this and life stuff) and be informed throughout the process! i hope that things continue to improve and you can continue to share updates throughout your process. Wishing you the best in health!

    • Robyn Downs

      Katie, I’m so sorry to hear that you’re going through this hard time! I’ll be thinking good thoughts for you, and hope you’re able to find answers and get back on the road to feeling good. All my best, Robyn xo

  • I hope women will listen to you, and their body, and take control of their health. The culinary nutrition certification I did this year has helped me recognize what I need to do to avoid autoimmune flare ups. I had Kawasaki’s as a child which puts me at risk for future autoimmune diseases. The healthier lifestyle I’ve adopted has made a huge difference in my energy level, and now I’m trying to teach more women how to do the same. I’m sorry it took so long for conventional medical doctors to figure out your diagnosis. With no autoimmune specialists (yet) sharing information together will help empower more women with the education they need.

    • Robyn Downs

      Emily, I completely agree on all points, and love that you are teaching women how to be aware of their health needs and sharing your culinary nutrition wisdom. Here’s hoping that the field will continue to advance and that we will continue to share with and support one another!

  • Amelia

    Thanks so much for this! I am convinced this is what I have, though my doctor says I just have an extreme b-12 deficiency. I’ve tried sublingual supplements and injections (every day for a month) but haven’t felt much of a difference. I recently found out my great grandfather died from pernicious anemia! So I’m also thankful to live in a time where it’s actually treatable. Still on the hunt for the right treatment, but hopeful! Please continue to share about this! ❤️

    • Robyn Downs

      Amelia, so sorry to hear you’re going through this! I was also told (at first) that it was "just" low b12, but you know yourself best, so keep advocating. I will say the injections took a couple months to fully take affect (my levels came up before I actually felt any better). I am also finding that watching my diet, stress, and sleep can make a big difference in flare-ups. Wishing you all the best on your road to feeling good! xxoo

  • Taylor

    If only we shared stories like these, as you did, we would then truly realize we indeed aren’t alone in these journeys! I also have been trying to figure out what is going on with my body over the past few months. Doctors continue to assume all is well- just take tylenol. I do find though, if you are your own advocate, and request tests, etc. they are generally supportive of these things. So it is certainly on our shoulders to work through the process!

    So glad you received your diagnosis. I can only imagine the relief in knowing- and now you’re able to make a plan and become familiar (which I think is all we ever want sometimes!).

    Thank you for sharing <3

    • Robyn Downs

      Taylor, I completely agree that there is power in sharing our stories! I hope you are able to find answers for yourself. Sending good vibes and healing thoughts!

  • Jennifer

    I was thinking about this post when I saw you this morning. Our stories have such power to help and even heal. Hugs, my friend. Jennifer

  • Corrie Cunningham

    I too have pernicious anemia but was misdiagnosed and went through 3 extra years of pain and agony before correct diagnosis. I was diagnosed with fibromyalgia instead, if I didn’t keep pushing it could have been a death sentence. I have multiple autoimmune diseases and I think this is why I was misdiagnosed. They still can’t figure out my shot sequence and they aren’t sure if I have permanent nerve damage. Fun stuff dealing with the aftermath.

    • Robyn Downs

      Corrie, wow, it sounds like you’ve been through a lot! I’m glad you were able to advocate for yourself. Wishing you the best as you continue to heal.

  • Amanda Lacy

    Thank you so much for sharing! I had a similar experience 2 years ago and found B12 and all methylated B vitamins to help; and when I became extremely anemic during my pregnancy last year I took loads of iron to survive. I am so glad you feel better! It is inspiring to hear our story and shove off the “moms should be tired” mentality.
    <3

    • Robyn Downs

      Amanda, thank you so much for sharing this. So glad you were able to figure out what you needed, and totally all about advocating for mamas!

  • Kay

    I found this article following my diagnosis of pernicious anemia yesterday (I’m 16 years old). Its helped clear up a lot of confusion and fear i had regarding it… My b12 isn’t nearly as low as when you found out because i got lucky. My mother is celiac, and she offhandedly suggested to my MD to get my B12 tested. Both herself and my MD assumed it wasn’t going to be low, but as it turns out my b12 levels are at 130 or so. Her intuition probably saved me so much stress. I don’t eat a Vegetarian or a vegan diet, so as it turns out I’m much the same as you, its hereditary in my case… I’m taking my first injection today. To the best of health for the both of us!

    • Robyn Downs

      Wow, Kay, I’m so glad you and your mom were able to advocate for your health and that you’re able to start with injections. Cheers to your good health!

  • Nancy

    I am curious if you ever found the cause of you PA? Like low stomach acid or H Pylori? I am recently diagnosed and awaiting my hemotology appointment. My family Dr and GI Dr seem to know nothing about how this work. Going on my 3 year of this I have made it my mission to get well informed. I am just hoping this next appointment isn’t more of the same. I have never felt so ill. I like you cry, but more because I seem to know more about this then the medical professionals I see. Today I was told because my b-12 serum was “normal” the symptoms I am having are not being caused from the PA! I am just at the end of my rope. Serum b-12 isn’t even a reliable test to check for this. All my symptoms fit PA.

    • Robyn Downs

      Nancy, I never did find the actual cause of the PA. My understanding is that it’s an autoimmune disease, and not fully so not totally sure what the cause (seems to be a genetic component. though no one in my immediate fam has it). I’ve been treating the root causes via a paleo diet and have seen much improvement. I agree that b-12 normals being "level" doesn’t mean that everything is fine. Sending you best wishes for healing and answers!

  • Eilish Dodd

    Reading this post brought back such bad memories for me! I was also feeling exhausted all the time but the doctor put it down to "having small children". I struggled along for a while until luckily for me a new doctor at my surgery suggested B12 deficiency. A test was arranged and low and behold she was correct. I was so happy to have a diagnosis because it meant I could do something about it. The doctor gave me injections weekly to increase my B12 and then reduced to every 3 months after that. My life improved dramatically. I was very happy. However, a few years later I arrived at my doctors to have my 3 month B12 injection to be told by the practice nurse that I now had enough B12 and I didn’t need it anymore. I was a little surprised and a little concerned but she assured me that too much B12 was also bad for me. I foolishly listened to this woman (instead of speaking to the doctor). To cut a long story short my health deteriorated over the next 6 months. I grew exhausted again, got shortness of breath, pounding heart rate and pins and needles in my feet. Eventually I returned to the doctor and – like you – burst into tears and begged her to put me back on injections. The doctor was furious – not with me – but with the nurse! She had undone all her good work and my B12 was very low again. She immediately started me on injections again. Now I have studied up on B12 deficiency and will not let anyone mess with my injections again! We all need to inform ourselves – it’s our health after all. Thanks for this article, it will hopefully help others in a similar situation.

    • Robyn Downs

      Eilish, wow, I’m so sorry you had to go through that! I’m so glad you were finally able to get the support and treatment you needed. Thanks for sharing.

  • Stephanie Burdine

    Thank you so much for sharing this. I went through a similar diagnosis process with some extremely severe symptoms. Found out I had Celiac and Pernicious Anemia. I do bi weekly injections which works well for me, but I still get bouts of exhaustion (the kind you described, and yes I feel that awful!) brain fog, nausea and many other things. But overall I live a mostly normal life. My symptoms get worse when I have a gluten reaction too.

    Doctors wouldn’t take me seriously for years! 🙁 It was when I had partial paralysis and my iron count fell to a 2.6 and I was hospitalized that they finally took me seriously. They kept telling me it was anxiety. I was stressed. I was tired from my children. Thank you for sharing this.

    • Robyn Downs

      Stephanie,

      I’m so sorry to hear you had to go through such an ordeal, and I’m so glad you were finally able to find some answers. Wishing you well!

  • Lindsay Schief

    Hello! I’m 41 years old and was diagnosed with pernicious anemia by my naturopath a number of years ago. I didn’t take it very seriously until…yesterday? I’ve been extremely dizzy for two weeks, with intermittent ear ringing. Yesterday at work (I work on my feet in a cafe), my feet and legs kept going numb and tingly. I blamed it on work but this morning when I woke up they were still like that, even in bed. It occurred to me to google pernicious anemia and sure enough, I have all the symptoms. I don’t have any healthcare at all and I’m a wage-worker so I am not sure what to do. I went to a beauty bar where they offer B12 injections, and went to the grocery store for liver pate and sardines and other B12-rich foods, just in case my body can absorb it through eating, which I’m not sure it can. I plan to get another shot in a few days and will also call my local low-cost medical clinic to see if they diagnose and treat pernicious anemia, but honestly I don’t have a lot of confidence they will :/ Anyway thanks for sharing, it’s hard to find info about this condition!

    • Robyn Downs

      Lindsay, so sorry to hear your struggling, and glad my story helped in some way. Hopefully you can find a way to at least get your b12 levels checked, and to supplement either via injections or food. Best of luck to you!

  • Kristin Landiss

    I was diagnosed with a b12 deficiency a few years ago after many doctors rolled their eyes at me as I cried in different offices over the course of a year, feeling like you said, that I was going to die. The b12 injections have been life changing, but my doctor still doesn’t really care that I have these bouts of extreme fatigue. During these episodes I also feel like I lose my ability to articulate and think straight, my stomach feels very inflamed, and I get horrible back pain. Is there anything you have found helps your fatigue episodes?

    • Robyn Downs

      Hi Kristin, so sorry to hear about your experience! In addition to the injections I’ve found diet and stress management to have the biggest effect. Since pernicious anemia is an autoimmune disease, I try to treat it as such with diet: low gluten, low dairy, and low refined sugar. I find this makes the biggest difference!

  • alpana rana

    Hi,

    Great to come across your story. I’ve been experiencing the same symptoms for the last 3 months . Started with constipation & gum inflammation& extreme fatigue. When the metallic taste kicked in we just took it to be cause of the gum disease. But the metallic taste has persisted for 3 months now, my mouth becomes sore often & the tip of tongue tingles, ear has been throbbing for a long time too. Saw my GP day before finally & she mentioned that the metallic taste is caused by vitamin B deficiency. Just did my blood work today & waiting for the results. Reading your post has given me so much hope that we might have an answer to all these issues as the blood report comes in at the same time gives me an insight into this world of B12 deficiency & a feeling that I’m not alone helps too. Thanks for writing such a beautiful & informative post/

  • Elizabeth Reis

    Hello,
    I have been dealing with fevers of unknown origin which they think is due to an autoimmune disorder as I’ve had some symptoms and labs previously suggesting that I may have one. Many of them are currently pointing towards pernicious anemia and after reading this, I am more convinced because I relate to how everyone is feeling in regards to the profound fatigue.
    I was wondering if anyone with pernicious anemia had the symptoms and labs markers for it but had normal or on the lower end of normal rbc, hemoglobin, and hematocrit? Thank you I’m advance!

    • Robyn Downs

      Hi Elizabeth, I hope you find some answers. In testing low for b-12 (prior to injections) I also consistently get a high MVC count (over 101), even with the injections.

  • alpana rana

    MY B 12 cane back fine along with everything else on my bloodwork except for high TSH. Today again I have a metallic taste in my mouth : just wondering whats going on as there has been no answer after bloodwork.

    • Robyn Downs

      I’m so sorry you haven’t been able to find answers yet. Sending well wishes your way as you continue to seek.

  • allie mann

    Found your article through google I find it shares some similarities with my health journey. I was diagnosed with pernicious anemia a few years ago when I was diagnosed with crohns disease. The injections definitely helped me get on track. But I might suggest… chicken livers I consume a ridiculous amount of chicken livers which I believe maintain b12 without any supplements. I can tell a difference after a week without my chicken livers. I know it sounds crazy but it has helped me so much.

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